Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Dyan on November 28, 2016, 03:42:26 PM
-
Hi,
I haven't been on here for a while cos I've had a good run, so to speak and been busy with one thing and another.
I was diagnosed with an underactive thyroid in May and was put on 25mcg levothyroxine.
After a couple of wks I started to feel better and I have been well now physically and mentally for 6 months. Recently I have been getting moments of losing my energy and for a few days now I have been so tired I could sleep anywhere and my mood has plummeted with anxiety. My body aches too and I don't seem to have much energy. I've seen my GP and had a blood test this morning.
Despite searching for thread on this to see who has experience this I was so confused ( another symptom)
So all I'm asking is "who has an underactive thyroid and experiencing these symptoms?"
I would appreciate any advice please. :thankyou: :) X
-
25mcg is a really low dose Dyan. Usually thyroxine is increased slowly and blood levels checked and a maintenance dose can be anything from 50mcg to 150mcg.
Have you noticed that you feel more cold than usual or your hair is falling out or your skin is very dry as these are all symptoms of underactive thyroid along with weight gain and constipation. I had all of these symptoms on and off both before diagnosis and whilst stabilising.
Ideally blood levels need to be checked 3 - 6 monthly whilst stabilising and at least once a year once stable.
-
I used to an advisor for a thyroid info charity. When you are first diagnosed with underactive thyroid you should have re tests done after 8 weeks then 12 weeks then 6 months and never ever go longer than 6 months between tests. If this has been happening with you then great and it will be interesting to know your latest results but so many GP's nowadays just do not check often enough. some only do retests every 2 years!!!
We always advised that everyone insists on a retest every 6 months an if there is any dosage change then retest again after 3 months.
Always ask for your results and what the ref range is because often if someone is borderline they will say you are in normal range. If you feel you are close to one end or the other then you can go back to gp armed with a bit of knowledge and ask for dose increase or decrease.
I am always happy to answer questions.
-
25mcg is a really low dose Dyan. Usually thyroxine is increased slowly and blood levels checked and a maintenance dose can be anything from 50mcg to 150mcg.
Have you noticed that you feel more cold than usual or your hair is falling out or your skin is very dry as these are all symptoms of underactive thyroid along with weight gain and constipation. I had all of these symptoms on and off both before diagnosis and whilst stabilising.
Ideally blood levels need to be checked 3 - 6 monthly whilst stabilising and at least once a year once stable.
My maintenance dose is 200 mcg and has been for many years. It has just been checked by an endo and not changed.
-
Thank you for all your replies ladies.
Babyjane - yes, I do feel the cold more than I ever have. Even wearing a thermal vest I'm still frozen.
I can't lose weight despite excercising and watching what I eat and I do have constipation. It was getting better once the thyroxine got in but it's not so good now again. I have had very dry nails but they seem to be ok at the moment after using nailtiques protein formula.
Countrybumpkin- I was put on levothyroxine 6 months ago with no mention of follow up blood tests.
Did you get depression and/ or anxiety with your symptoms?
I'm prone to getting both, but I know that they can be symptoms of underactive thyroid.
When I'm not feeling good it does also affect my mental health.
-
This makes me cross and sad especially when I think of the care I have received for nearly 30 years now. The ignorance about thyroid issues sometimes seems to be on a par with the obvious ignorance about menopausal issues from what I am reading.
Dyan, 25mcg is clearly not enough, I doubt it is enough for anyone with UAT. You are presenting with all the symptoms of a struggling thyroid, I would be surprised if countrybumpkin did not agree. When I was diagnosed in 1987 I was started on 50mcg and increased to 100mcg after a month and 150mcg after 3 months after which I started to feel a bit better but it has to be done slowly.
I have been on a T4/T3 combination treatment now for some years but that is just me. the equivalent thyroxine dose I have is around 1000mcg a week which averages out to around 143mcg a day, say the equivalent of 150mcg which is also the dose my mother took for years as she also had the same thyroid disorder.
Please look at the thyroid UK website and get more information about this common condition and go back to your GP as soon as you can and say how you feel, ask for an update blood test. I am not a medic but I would be very surprised if you did not need a dose increase or you could become quite ill.
-
As Babyjane says the level of care is appalling with thyroid disorders. The charity I worked for was all about getting the patient to manage their condition so we educated as much as anything.
I would imagine you need a dose increase as what usually happens when someone develops underactive thyroid is that it progresses. A starting dose of 25mcg is so tiny as to be almost insignificant and this dose is given to people who are only very borderline. Usually you would have it tested again as i said at 6 or 8 weeks to see if your does needs increasing and then again at another 6 or 8 weeks until eventually the right dose is reached. It is dangerous to give someone a big dose of thyroxine even if they are very underactive and its usual practise to slowly over many months increase the dose until required supplementation is reached.
So if your results show you need to increase the dose then insist on another test at 6-8 weeks. IF necessary tell them you have spoken to a thyroid advise charity and this is what they said is usual practise!
-
Thank you everybody.
I should be getting the blood test result back,hopefully later today.
I will certainly talk to my GP about regular testing.
I can't believe that I was left like that. To carry on getting repeat prescriptions of the 25mcg thyroxine without seeing my GP.
I will keep you all posted. X
-
Knowledge is power are they say ;D
Please let us know your results.
-
Thank you everybody.
I should be getting the blood test result back,hopefully later today.
I will certainly talk to my GP about regular testing.
I can't believe that I was left like that. To carry on getting repeat prescriptions of the 25mcg thyroxine without seeing my GP.
I will keep you all posted. X
Good luck! I have had regular blood tests for thyroid since I was about 3 months.
-
Will do :thankyou: :)
-
Not had blood test result yet. Will ring again this afternoon.
Managed to get out for a walk this morning but my legs ached so much.I have pains in my arms too and my fingers swell up and are painful. Are these all symptoms of UAT?
-
Hi menomale,
Thank you for your reply.
I have mental health issues. OCD with accompanying depression & anxiety for which I take ADs.
-
Yes they do help along with some CBT I had a few years ago.
I'm feeling depressed at the moment and wondering if it could be my thyroid.
-
Have you been on AD's long term as these can impact on your thyroid medication so if you started them after you started thyroxine then this may alter your dosage requirements.
Sadly so many conditions can cause your symptoms from meno to depression itself to UThyroid. The most common symptoms are sudden weight gain with no increase in food, very dry skin, extreme tiredness but these are just the most common.
-
I've been on Ads for 12 years.
Just got my thyroid blood test result and all I got was "satisfactory" ???
My GP not in tomorrow or Friday so I'll have to ring at 8 Monday morning to see him at my other surgery.
Would my thyroid have been corrected on 25mcg thyroxine over the 6 months?
I need to se my GP to discuss this and regular blood tests.
Why am I still feeling crap?
-
Because your immune system is out of kilter? Thyroid dis-function can cause the patient to feel awful: either running themselves ragged 24/7 or completely worn out! Be kind to YOU!
-
Thank you CLKD.
With a satisfactory result do I need more thyroxine or not?
I'm so confused with this whole thyroid thingy :-\
-
I only got a "satisfactory" didn't think to ask for anything else. WhT do I ask for anyway?
-
Dr will ring me back on levels before 6.30 today as receptionist not allowed to give out info other than satisfactory etc etc.
I have been on HRT for 11 years. Sandrena estrogen gel & mirena coil.
-
I don't think anyone has yet mentioned how the thyroid can kind of surge and sputter when it starts going. So even if you're getting checked regularly, which you should be, there will be days or weeks when you feel better or worse as you essentially cycle through being hypo-, hyper-, and normal. It can take a while for that to settle and you won't feel good all the time until it does. Now that my ovaries are apparently playing that same surge and sputter game, I can't imagine how hard it must be for women who run into thyroid issues for the first time during peri. That's a lot to try to balance at once. My thyroid started going out in my late 20s, so thankfully it's remained stable through peri, with the exception of when the doctor tried to tinker with my dose to tackle my peri symptoms.
-
Whenever you ring up for test results no matter they say normal or okay always ask for your TSH result and your freeT4 result and what the reference range is as this is all in front of them on the path report. If you go to see your GP about this then again ask for this information.
If it is satisfactory this means that your TSH FReeT4 and T4 will be within normal reference range for that laboratory but if you are at one end of the other of reference range then you may want to increase or decrease dose to see what happens.
An example is - my lab reference range for TSH is 0.3 to 5.6. So if someone has a TSH of O.6 then tney are bordeline overactive and need to reduce dosage but if their TSH is 5.5 then they are borderline underactive and need to increase dose. Hope you can follow this.
So ask your GP exactly where your results are on the reference range and if one end or other then discuss altering dosage. If they really are normal then its more than possible your symptoms re not to do with your thyroid and Dr will want to look further.
-
Think I've got you countrybumpkin :)
The receptionist rang me tonight and said that a read out of my results will be at the surgery for me to collect in the morning. So I will look then and get back to you all.
Thanks ladies :)
-
Glad I haven't confused you, in thyroid tests it always seems as if everything is opposite of what you would imagine! Good luck tomorrow
-
Maybe ask if a Practice Nurse can read through them with you? Otherwise you'll be none the wiser ::). Sometimes with thyroid function tests 'within normal limits' isn't enough, if a patient is still feeling unwell then levels need to be checked and medication taken into consideration.
Sleep tight!
-
Got my results back in black & white and you're right CLKD I'm none the wiser. :-\
Haven't got a clue what they mean :-\
There was no doctor or nurse at the surgery, just the receptionist, as they closed at 12.30 today.
I will list the results for anyone who can work it out. Here goes:
Serum ferritin level(iron) ( XE24r)- 32ug/L (23.0-300.0)
Serum TSH level (XaELV - 2.64mu/L (0.35-3.5)
Serum free trilodothyronine ( XaERq) T3 - 4.0pmol/L (3.8-6.0)
Serum free T4 level (XaERr) - 14pmol/L (8.0-21.0)
I have a list of a full blood count too but it's quite long and again I haven't a clue :-\
If anyone can work the above out I'd appreciate it so I know what I'm talking about on Monday when I see my GP.
:thankyou: X
-
Thanks for that menomale but after looking at the link I'm even more confused ::)
It looks like the readings on there were in the US so probably different to here in the uk. I could be wrong. Still confused though :-\ ;D
My iron is 32ug/L(23.0-300.0)
-
No problem. I get confused at the simplest of things :-\ meno/thyroid brain ;D
I'll look forward to the PM and thank you for your help.
You are so good :) X
-
Every single nhs lab has its own reference range so comparing with anything else is not alot of use. Your T3 is still okay just at lower end of normal and your other thyroid results are bang on okay.
Re T3, in the past your Dr could prescribe T3 medication if you had a very definite deficiency which you don't but recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer and at present all the nhs is doing is upping the thyroxine dosage for affected people which is not much use as their problem is they can't convert thyroxine to T4. Don't know if you know this but your body converts thyroxine tablets to a usable element T3.
Ferritin is your bodies store of iron and not your blood count. Most lab refernces for this are 20-30 but you have put 300????? If your 300 is a typing error then your fine your stores are on the high side but if 300 is correct then you are low side of normal but still okay. Mine is always 21 which is borderline low but as mine is always like that and my blood count is always at top end of normal its fine.
-
recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer
with respect countrybumpkin this is not strictly true and could be alarmist.
If T3 is recommended or prescribed by a consultant endocrinologist then the GP can prescribe it. I am in the 15% sub group of patients that cannot convert thyroxine to T3 and have been on T4/T3 combination therapy for many years. I see my endocrinologist (who is at the top of his field) every 6 months and my GP prescribes my Liothyronine alongside my thyroxine.
I am very fortunate to be looked after by him.
-
Hello menomale, yes it works very well and has done for a long time. I was never stable on thyroxine alone.
As I said I am very fortunate to be looked after by one of the top endocrinologists who has a particular interest in the sub group of patients who do not convert properly. He has done much research and has written papers on the subject which he sent me a copy of, although it was all a bit technical for my little brain :)
-
recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer
with respect countrybumpkin this is not strictly true and could be alarmist.
If T3 is recommended or prescribed by a consultant endocrinologist then the GP can prescribe it. I am in the 15% sub group of patients that cannot convert thyroxine to T3 and have been on T4/T3 combination therapy for many years. I see my endocrinologist (who is at the top of his field) every 6 months and my GP prescribes my Liothyronine alongside my thyroxine.
I am very fortunate to be looked after by him.
Out of interest babyjane, how did the endocrinologist establish that you weren't converting T4 to T3? Was it just that your TSH and other tests done appeared correct/normal but you had symptoms of underactive thyroid?
-
This is the information given out by the thyroid charities at present so have they got it wrong? I got a newsletter just last week with exactly this explanation and asking for T3 patients to contact them as they are going to petition??
I am always happy to be better informed and sorry if I passed on wrong information
recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer
with respect countrybumpkin this is not strictly true and could be alarmist.
If T3 is recommended or prescribed by a consultant endocrinologist then the GP can prescribe it. I am in the 15% sub group of patients that cannot convert thyroxine to T3 and have been on T4/T3 combination therapy for many years. I see my endocrinologist (who is at the top of his field) every 6 months and my GP prescribes my Liothyronine alongside my thyroxine.
I am very fortunate to be looked after by him.
-
Have checked back to newletter and googled and it is policy with some but not all nhs commisioning group so varies from area to area of the country. My area that the newsletter covered is sadly being affected. Really hope you do not get affected by this.
-
when I was diagnosed with Hashimoto's the doctor could not stabilise me. I needed a higher and higher dose. It got ridiculous, I was taking 250mcg, my free T4 was 26 but my TSH was still high and I still had hypothyroid symptoms. I accessed my husband's works medical cover to be referred to an endo who suggested starting on the combination. within 3 months things were improving.
I have been with my current endo for 8 years and he one of the top guys with a specific interest in the sub group of patients who do not convert. MY levels now stay stable so long as I remain on the same brand of Thyroxine. When it was changed 2 years ago I became unstable as my system is hypersensitive to any change however small. Fortunately there is only one brand of Lio.
I have e mailed his secretary about this T3 Lio question and she is going to speak to him about it for me. I will let you know what his response is when she gets back to me.
-
That's interesting BJ.
When I see my GP on Monday I will go through everything with him. TSH,T3, T4 etc until I'm satisfied.
The trouble is the practice only uses the meds that are not costing the surgery much money.
I was told this by a nurse practitioner when I had iritis and he prescribed some AB that didn't work.
When I went back to see him he said "we always use the cheapest"
It is very frustrating. I have not got the relationship I would like with any GP.
The one I'm assigned to does not deal in meno, mental health,thyroid etc and the one I'm seeing now doesn't know me that well.i can ring up and not get an appointment for 4-5 wks hence why I'm ringing at 8 Monday morning to see him because he's at the surgery near where I live. Whether I'll get in or not is another question.
It will be interesting to hear about the T3 from your consultant.
-
I never take the care I get for granted but it makes me both sad and angry when I hear stories like yours. My GP and consultant keep me as well as I can be, I know that, but I never take it for granted because I know I am fortunate.
Our surgery also uses the cheap generics but they don't help me and I react to them so I get the branded versions of the medications I need as recommended by my consultant, who I trust with my life. If things ever change I know I will not be as well as I am now so every day I feel thankful.
Speak soon
BJ x
-
I had to go private for my mental health. My GP here just releases the meds on my psychiatrists say so.
I've rung my health insurers to see if I'm covered for private care for thyroid problems but they say "No" and referred me to 2places that did full health check ups.
If I don't get any joy with the GP Monday my DH said we'll look into having a private health check.
-
I would be furious if my GP told me that I was too cheap for proper medication!!!! Maybe go in with the tack of "If you prescribe cheap medication for some patients which works for them, maybe now is the time to try medication which is slightly more expensive to treat my problems, as the cheaper versions haven't worked!" Their attitude is unethical and probably against the Hippocratic Oath?
Dyan - have a chat with a Pharmacist to see what the actual difference is between the various types of drug you may require?
:bighug:
-
Thank you for the :bighug:
-
You are always welcome!
-
Many years ago i got the same branded thyroxine ( Goldshield) on prescription but then it all changed when surgeries were in charge of their own drugs budgets. suddenly branded thyroxine was not allowed only the generic and I found that if I got different generic makes then my thyroid would go haywire. I have been told that the generic drugs can have 10% leeway either less or more of the active ingredient plus they use different fillers which means people absorb then differently etc. If what I was told is true this would explain things. I now stick to same chemist and they have used the same generic thyroxine for past 2 years and my thyroid has settled down again. But trying to get a GP to acknowledge this is almost impossible as they just won't prescribe by brand because of the cost!
I also take anti ulcer drug ranitidine which is one of the first anti ulcer drugs for hiatus hernia, I have taken it for over 20 years and it works fine but my GP put me under enormous pressure to change to omeprazole type drugs as they are huge amount cheaper. I tried all 3 of the proton pump inhibitor drugs and got severe side effects so he had to put me back on my old weaker drug.
-
I can't understand why, when a medication works, GPs are reluctant to continue prescribing it. :-\ It would save on money, it saves on appt. time - when they could be seeing another person - etc. etc. etc. :sigh:
-
countrybumpkin was that Eltroxin? that is what I had and when it was withdrawn and replaced with a generic I became very unstable. what you have been told about different absorption rates and the 10% difference is quite true as I was told the same by my endo.
I have found a generic brand that works for me and the endo has instructed my GP to specify the generic brand - Actavis - on my prescription. Apparently Wockhardt is also a reliable generic. I have the same issue with my propranolol and that has also been specified. GPs have to follow recommendations from consultants and if a brand is specified on the prescription the pharmacy has to source it if they don't stock it, whereas they don't have to if you just ask for it. Are you under a consultant endo?
I found generic ranitidine gave me nausea and terrible gastric pain but if I buy Zantc myself it is fine so this surely proves there is a difference in the quality between generics and branded products.
-
Babyjane, Goldshield is the brand name of the thyroxine and is still I have read the best but impossible to get it prescribed now by a GP due to costs. My generic is either wockhardt or actavis now and on both these I have been stable - if my pharmacist changes supplier I will change pharmacy!
Most thyroid patients are not under hospital consultant endo unless there are additional complications, I have straighforward underactive thyroid and have never ever seen a endo and no GP would refer me so can't go down that route to get branded drug sadly.
Glad you are stable
-
Countrybumpkin - have you talked to your GP about a discussion with an endo.? Or find out which Hospital locally has the appropriate dept. and ring the Secretary for advice? A one-off private appt. might be the way to go?
-
Yep, Goldshield's thyroxine was Eltroxin. I was on it for 10 years and was distraught when it was no longer available when Mercury Pharma took over Goldshield. They swore that their generic was exactly the same as Eltroxin and the ingredients list was the same, but no way was it the same stuff!! >:( My levels went haywire and I know I was not the only one. Actavis and Wockhardt seem to be the better of the generics. Stay away from Accord ::)
Hope you keep well also countrybumpkin x
-
countrybumpkin was that Eltroxin? that is what I had and when it was withdrawn and replaced with a generic I became very unstable. what you have been told about different absorption rates and the 10% difference is quite true as I was told the same by my endo.
I have found a generic brand that works for me and the endo has instructed my GP to specify the generic brand - Actavis - on my prescription. Apparently Wockhardt is also a reliable generic. I have the same issue with my propranolol and that has also been specified. GPs have to follow recommendations from consultants and if a brand is specified on the prescription the pharmacy has to source it if they don't stock it, whereas they don't have to if you just ask for it. Are you under a consultant endo?
I found generic ranitidine gave me nausea and terrible gastric pain but if I buy Zantc myself it is fine so this surely proves there is a difference in the quality between generics and branded products.
Eltroxin was the version which we had as kids and teenagers . I forget just how long ago it switched to Levo but it was a long time ago. I liked the taste of Eltroxin and used to chew them.
-
Countrybumpkin - have you talked to your GP about a discussion with an endo.? Or find out which Hospital locally has the appropriate dept. and ring the Secretary for advice? A one-off private appt. might be the way to go?
If the thyroid is stable on treatment then you cannot see an endo, you really do need to have complications or they are usure of diagnosis etc to get a GP referral. I have twice been unstable and a GP has said if this does not settle then they would do more indepth blood tests and refer me but each time it has settled down itself. HOrmonal upheaval is a very common reason for a stable thyroid to become wobbly ;D
-
Countrybumpkin - have you talked to your GP about a discussion with an endo.? Or find out which Hospital locally has the appropriate dept. and ring the Secretary for advice? A one-off private appt. might be the way to go?
If the thyroid is stable on treatment then you cannot see an endo, you really do need to have complications or they are usure of diagnosis etc to get a GP referral. I have twice been unstable and a GP has said if this does not settle then they would do more indepth blood tests and refer me but each time it has settled down itself. HOrmonal upheaval is a very common reason for a stable thyroid to become wobbly ;D
A year ago I wanted a referral to an endo to check whether certain symptoms were thyroid related but my GP was very unwilling. However I then had an outpatient appt. with a neurologist. No problems was found but the neurologist advised my GP that my thyroid needed a review so I got the referral. That has taken until now to complete. I was told by the endo that only patients with overactive thyroid probs were supposed to be under an endo. Underactive is supposed to be managed by the GP!
-
I was told by the endo that only patients with overactive thyroid probs were supposed to be under an endo. Underactive is supposed to be managed by the GP!
I fear you have been misinformed as my endo has a lot of patients with unstable UAT and Hashimoto's on his list including ones like myself in the sub group that do not convert. Of course if I had stabilised on thyroxine in the beginning like my mother I would never have asked for the referral in the first place. Mother was managed by her GP and never had any problems.
Perhaps it depends on the area (one reason we don't move house) and individual budgets. All I know is that there are a lot of patients, mostly ladies, struggling with thyroid issues and not getting proper treatment. The fact that thyroid disease gives free prescriptions shows that it is something that needs to be taken seriously.
-
I remember during training that one of the trainers said that even though someones blood tests on medication may be totally within normal range our bodies cannot convert thyroxine to every single hormone that the thyroid naturally produces but it should convert to the most important ones for life and in my case this is so true. I appear to have no metabolism ;D ;D and have to eat very strict diet and am still a few stones overweight, I have the dry skin, weird eyebrows. raised cholesterol that are all part and parcel of not right thyroids.
But I am very glad that they managed to synthesize thyroxine even if it does not to a 100% job.
Certainly in my area, a goitre or overactive thyroid or if you develop antibodies to thyroxine medication gets you an endo referral but otherwise its the GP
-
I appear to have no metabolism ;D ;D and have to eat very strict diet and am still a few stones overweight, I have the dry skin, weird eyebrows. raised cholesterol that are all part and parcel of not right thyroids.
I guess I am used to my chap who would not be happy with this at all and would tweak your dose until it was the best it could be for your individual case and you were as well as possible. He doesn't deal in increments of 25 or 50mcg and I don't take the same dose every day but average 650mcg a week of thyroxine (100mcg for 5 days out of 7 and 75mcg for 2 days out of 7) and 5mcg liothyronine twice a day. In the past I have been on as much as 132.5mcg and as low as 62.5mcg.
People who are euthyroid don't secrete the same amount of thyroid hormone every day so it stands to reason that the amount we take depends on our activity levels and physical needs.
I would dearly love to see all thyroid patients treated properly.
-
Interesting posts.
With the NHS cutbacks it seems some surgeries are prescribing the cheapest medication or not the one to suit the patient. I feel this is happening at my surgery.
If I get no joy on Monday when I see the GP I will look to having a private health check.
I know something's not right with me. Whether it is thyroid or depression the symptoms are there.
Depression is on the list of symptoms amongst others that I'm experiencing. Who knows which it is? I just want to feel well.
-
Thyroid is a hormone so it can affect mood !
-
Babyjane. I sooo agree with what you have said. Quite a few years ago in usa they were trying to come up with a meter like diabetics use that thyroid patients could test their blood every morning and adjust their medication just like my insulin dependant husband does with his insulin. They did actually devise a meter but it never got any further as far as I know but to me this would make perfect sense. If diabetics can moniter and control their own medication I feel we should be able to as well ;)
My GP was happy for me to have tests every 3-6 months and I would get the results and then decide if I thought I needed to tweek my dose and as long as I told him and he agreed he was fine but he has now left and the other GP's are very much by the tick list >:(
CKLD all hormones affect mood!
-
All the best countrybumpkin. It'a been nice to share ideas and experience with you :)
-
All the best countrybumpkin. It'a been nice to share ideas and experience with you :)
Same here :)
-
I was told by the endo that only patients with overactive thyroid probs were supposed to be under an endo. Underactive is supposed to be managed by the GP!
I fear you have been misinformed as my endo has a lot of patients with unstable UAT and Hashimoto's on his list including ones like myself in the sub group that do not convert. Of course if I had stabilised on thyroxine in the beginning like my mother I would never have asked for the referral in the first place. Mother was managed by her GP and never had any problems.
Perhaps it depends on the area (one reason we don't move house) and individual budgets. All I know is that there are a lot of patients, mostly ladies, struggling with thyroid issues and not getting proper treatment. The fact that thyroid disease gives free prescriptions shows that it is something that needs to be taken seriously.
Most of my life I haven't had problems though, with hindsight, my recurrent throat and chest infections prior to my goitre removal were probably thyroid related. They stopped/reduced to a very normal level straight afterwards. My dosage has remained almost unchanged and having it monitored by the GP has mostly been fine. However, since menopause, I have wanted to get it checked. This has now happened but I am not 100% convinced that my aching calves/feet aren't connected to the thyroid. I am now taking extra Vit D but haven't noticed a difference. The GP insists that it is muscular and i need to do Pilates or see a physio. The aching is worse first thing in the morning.
-
All the best with your GP appointment tomorrow Dyan.
Katejo the thyroid levels can fluctuate with the hormonal upheaval of menopause and need to be monitored more closely. I wish GPs knew this :(
Hypothyroidism, in whatever form, is serious and that is why you get free prescriptions and yet it is not taken seriously. It needs to be monitored as closely as diabetes. Untreated it can lead to coma and death the same as diabetes can. Poorly treated it can take a toll on the body both physically and mentally.
My endo explained the thyroid as the leader of the orchestra, the orchestra being all the different systems of the body. For me, in the beginning, it affected my digestive system, my blood count (severe anaemia) and my reproductive system. I still believe that if it had been diagnosed sooner I might have avoided a hysterectomy, not that I have ever minded saying goodbye to periods, it made the menopause easier to deal with.
-
I have posted this before but the biggest impact when I was training was the trainer giving us all a photo of a victorian lunatic asylum of the inmates and asking us which ones of the ladies had underactive thyroids. In the photo there were 2 women who had almost no hair and were horrendously bloated with moon faces and looked totally blank. These poor women were suffering from underactive thyroids and this is what happens if untreated over many years, they were mentally very slow and classed as subnormal >:( with all the other physical symptoms. He said they would have died eventually.
Thankfully our drugs keep us alive and reverse most of the symptoms but as babyjane says it is a condition that affects the whole body and I agree Dr's just do not take it very seriously once blood results are in the so called normal reference range!
-
I remember reading that countrybumpkin and sadly it is true and appalling :'( .
Many years ago, when I learned about the implications of poorly treated hypothyroidism, I wrote to the editor of a well known women's magazine. I might have posted this before. I got a call asking if they could run an article and, of course, I agreed.
After the magazine was published, over the next three months, the magazine's editorial department forwarded to me about 80 letters that had been sent in response to the article and most of the stories were heartbreaking and nearly all from women. I answered as many of them as I could in a general sense without giving any medical advice as I am not qualified to do so.
2 years later, and I remember this clearly, I was sent a letter that had been sent to the publishers of the magazine. The lady who sent the letter had picked up an old copy of the magazine in her doctor's surgery, the one with the article, and sent a response. I realised this was only the tip of the iceberg and I have felt very strongly about poor thyroid treatment ever since.
I do hope that Dyan, the OP, has found these posts informative as I am aware I have rather trampled over her thread.
-
Probably a fairly useless bit of info..... :-\but I was told that it is essential to eat Brazil nuts or any other type of food containing Selinium as this is a vital mineral needed in the body in order to convert the T4 to T3....any excuse to nibble a few daily, esp the choccy coated ones :)
-
hi Cassie, brazil nuts are good for selenium which is good for our brain function. Anything that helps my brain function has to be beneficial :)
-
Thank you BJ
-
Hi all, just got back from seeing GP.
He said my levels were 'ok' and some GPs wouldn't have put me on thyroxine to start with"
I told him I felt really unwell,depressed,low mood etc etc. I went in armed with a load of questions after going on the thyroid uk website( thank you to all who recommended it)
I asked GP what my levels should be and he said, "it's hard to say"
He knows about my history of OCD depression & anxiety and he said, "it could be your thyroid or depression"
I then asked if increasing the dose of thyroxine would do me any harm and he said "No" so he has increased it from 25mcg to 50mcg. He told me to take my omeprazole 2 hours after taking thyroxine as it can stop absorption. He only said this after I had asked him about,it thanks again to thyroid uk.
I told him I just want to feel well again and he said did I feel well on the 25mcg thyroxine and I told him that it was the longest I had felt well physically and mentally in a long time and then symptoms started coming back.
He was 'ok' ;D I sort of expected everything he said,again because of reading other peoples experiences and I felt I had to push a bit to get the extra thyroxine. He said to me he was wondering if it was psychological " but w'ell see how you get on with the increase".
I sent my test results to thyroid uk and the administrator came straight back to me and said my T3 was low but GP said 'ok'. Someone else on TUK said my iron was low but again GP said 'ok'
I just don't want to feel 'ok' I want to feel good again.
Sorry for long post and thank you ladies for your support.
-
I meant to say my blood pressure was high too.
-
See what happens once you have upped the dose to 50mcg a day - leave it about 6 weeks to really know and then go back at 8-12 weeks and have a retest to check your thyroid levels. Its very unlikely that a 50mcg dose will overactive you but tis always wise to check after 8-12 weeks to be sure.
The big problem with the range of thyroid results is that no one knows whats normal for that person so whats normal for one person can be under/over for another. Its a case of finding the bit of the range that is right for you and trying to keep there!
I would imagine your bp was high due to stress and white coat syndrome! I have the worlds worse white coat syndrome so my GP never takes my bp in the surgery but I do it myself at home for a few weeks a few times a day about 3 times a year and take the readings in with me.
-
Hi countrybumpkin, thank you for your reply.
He wants to check my blood again in 4 wks. When I asked him about regular blood tests for thyroid he said it wasn't necessary.
-
I was thinking about you this morning Dyan and wondered how you were getting on at the GP.
I agree with everything countrybumpkin has said but I don't agree with your GP's dismissive attitude to re- testing you at a later date especially as your thyroxine has been increased.
-
Thank you BJ.
Yeah, he totally dismissed it when I said about having regular blood tests.
He said it is not necessary, maybe once a year.
I'm now beginning to worry about the increase.I felt I had to push him in order to have an increase but when I asked if it would do me any harm in taking an increase he said no.
Sorry ignore me I'm a worry wart. :-\
I went to see him with some info from Thyroid uk and a lot of people are getting 'ok' 'normal' readings even though they still have symptoms,as in my case.
-
It is the most difficult thing to get GPs to realise that 'within normal limits' for most, can be the wrong limits for others >:(.
Maybe keep a note of how you feel: twice a day? Also what you eat, your thought patterns etc.; then you have something solid to take to your GP. Keep posting for advice too! :foryou:
-
I have posted this before but the biggest impact when I was training was the trainer giving us all a photo of a victorian lunatic asylum of the inmates and asking us which ones of the ladies had underactive thyroids. In the photo there were 2 women who had almost no hair and were horrendously bloated with moon faces and looked totally blank. These poor women were suffering from underactive thyroids and this is what happens if untreated over many years, they were mentally very slow and classed as subnormal >:( with all the other physical symptoms. He said they would have died eventually.
Thankfully our drugs keep us alive and reverse most of the symptoms but as babyjane says it is a condition that affects the whole body and I agree Dr's just do not take it very seriously once blood results are in the so called normal reference range!
Wow! I was diagnosed with congenital hypothyroidism at approx. 3 months and my parents were warned that I was likely to have learning difficulties. My Mum told me that she (together with my Dad) had visited special schools when I was a baby just in case. At a later date, when I was about 3, she took me to a regular appt. with the endo at the local hospital. He wanted to assess my speech development and tried to persuade me to count. I was shy and didn't say anything. My Mum encouraged me by starting 1 2 3. I promptly recited the full song which starts with "123 Mother caught a flea, put it in a teapot and made a cup of tea....." The endo looked at me and said something like 'There's nothing much wrong with her!" :)
-
:clapping:
-
love it :)
-
My Husband is the calmest person you will *ever* meet, but he has white coat syndrome ::)
-
Dyan - grrrrrr to your DR :( Every thyroid patient should be tested every 6 months as so much can change in 6 months let alone a year!
At my surgery I can book direct with a phlebotamist for a blood test which i do every 6 months and I just turn up for the appt and tell her I need a thyroid function test as its 6 month since my last one and she does it. If i have a dose change I turn up 3 mnths later and say I need to have it checked to see if the dose is correct and again its done.
See if you can book blood tests with a nurse without going through the Dr and if you can't can you see a different GP at the surgery and explain that thyroid uk and other thyroid charities have advised a sooner follow up test after a dose change.
-
countrybumkin you are lucky. My surgery does not take blood tests now and they have to be done at the phlebotomy clinic at the hospital.
My endo always gives me a repeat blood test form at every 6 monthly review and he also gives me one extra in case I feel things are slipping and I can get a retest sooner if needed.
Dyan, I don't think I like your GP :rant:
-
Yes I agree with you both CB BJ.
I thought I'd maybe found the right GP but Monday I did feel a bit put off by his attitude.But again I think it's all to do with budget & guidelines so I don't blame him entirely.
I wish GPs would just listen and treat the patient accordingly without always referring to 'guidelines'.
I'll give you an example. When I was put on Fluoxetine 12 years ago for my OCD my psychiatrist started me on 20mg and slowly increased to the level that I needed to make me well. I now take 100mg daily. The guidelines in most GP surgeries is up to 60mg and they always comment on how high a dose I'm taking and have a little laugh. I had to go private for this treatment because I was only ever given 20-30mg of any SSRI and it just wasn't enough to get me well so I suffered for years.The NHS didn't really know what was wrong with me and neither did I until I went private.
I'm so glad I did otherwise I dread to think what could have happened................... :'(
-
countrybumkin you are lucky. My surgery does not take blood tests now and they have to be done at the phlebotomy clinic at the hospital.
My endo always gives me a repeat blood test form at every 6 monthly review and he also gives me one extra in case I feel things are slipping and I can get a retest sooner if needed.
Dyan, I don't think I like your GP :rant:
My surgery also offers no blood tests. They do take place in the same building (run by a separate phlebotomy service) but don't involve the nurses/doctors at all. They can't be booked either. You have to turn up and queue well before the building opens to avoid a very long wait.
-
My thyroid gland decided to start playing up in 2007. I just couldn't stay awake - as soon as I came in from work I went to sleep and generally felt awful, plus I was piling on weight for no apparent reason, really scary. Also I lost most of my eyebrows :'(
Anyway blood tests showed TSH level was very high at about 57 and so I was started on 50mcg Eltroxin and gradually increased up to 125mcg.
I didn't feel too bad on the thyroxine, but losing weight was impossible. I asked endo if I could try some T3 alongside the T4 and surprisingly he agreed. I have now been on the combination for about three years. I can't honestly say that it made a lot of difference - losing weight is still nigh impossible - but I generally don't feel too bad and reckon that it has to be better having the combination therapy than just the thyroxine.
I also missed the Eltroxin when that disappeared, I am sure it was better than the generic. The make I get is Almus whatever that may be.
As I am on T3 the endo sees me once a year to check on how things are going, which is nice. However, he is one of those endo's who is adamant that the only important test is the TSH level and FT3 and FT4 don't count. Trouble is he specializes in diabetes - why are there so few thyroid specialists around.
Out of interest, does anyone know of thyroid specialist in the South West of England?
-
Living as I do in the frozen north of the country thankfully at the moment the Dr's surgery in my very little town is still operating well. If we need to see a GP we just ring at 8am and I have always got appt that day if you can't wait a few days for an appt. We also have choice of telephone appt and they still do home visits! I am sure this is all on borrowed time and things will change for the worst but making the most of it while we have it ;)
I only have one arm that they can get blood out of due to a cyst in my other arm and my veins go into hiding but thankfully this one phlebotamist can always get blood out of me, just to add to the excitement I faint at the drop of a hat or the sight of a needle ::)
-
Living as I do in the frozen north of the country thankfully at the moment the Dr's surgery in my very little town is still operating well. If we need to see a GP we just ring at 8am and I have always got appt that day if you can't wait a few days for an appt. We also have choice of telephone appt and they still do home visits! I am sure this is all on borrowed time and things will change for the worst but making the most of it while we have it ;)
I only have one arm that they can get blood out of due to a cyst in my other arm and my veins go into hiding but thankfully this one phlebotamist can always get blood out of me, just to add to the excitement I faint at the drop of a hat or the sight of a needle ::)
My surgery does phone appts but I am not keen as the receptionist cannot give even a rough time so I miss them. At work my phone stays in my drawer.
-
Just an update on my increased thyroxine.
It has been 8 days since I increased from 25mcg to 50mcg and I think I'm starting to feel an improvement. My mood has lifted a bit, I don't seem to ache so much although I'm still felling very tired. Feeling a little bit more myself so hopefully on the right road :)
-
:bighug:
-
so pleased for you Dyan, thank you for updating us. The improvement does come slowly but it sounds as though you are going in the right direction :)
-
Thank you CLKD & Babyjane
-
Don't forget to take it on an empty stomach Dyan and wait at least 30 minutes before you eat.
-
Yes I do thank you LM :) X