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[shoppingqueen]

Great advice thank you Penelope! And it's good to know we are not alone in this xxx

[Kathleen]

Hello again ladies

Can I join you in your frustration?

I saw my GP yesterday and he is happy with my thyroid blood test results even though I am  still symptomatic and feel rubbish. He has attributed my emotional issues to coming off HRT eight months ago but that doesn't explain my cold hands and feet. My TSH has reduced from 37 to 19 and because 20 is top of the normal range I am apparently okay. I have been taking 75 mcg of Levothyroxine for eight weeks and he doesn't think I need to change it but I need another blood test in two months time. The trouble is I still feel awful and my anxiety and tearfulness have ramped up.

Shoppingqueen - am I right in thinking that you were being treated for low Thyroid then became ill with a virus but your Levothyroxine wasn't adjusted properly to make you feel well and you now have a diagnosis of Hashimoto's? Sorry if I've misunderstood your story.

Artmouse -  As I have a persistent sore throat (doctor couldn't give me a reason why) I was wondering if my B12 was low. I see you were taking these supplements but have stopped them while you have your blood tested. Can I ask why you were taking them and if they helped you at all? I think the British Thyroid site says that TSH should be low to feel well so was your reading at the top of the range, for example like mine at 19 but your GP thought that was okay?

Sorry to bother you both with questions but  I don't feel reassured that my GP is taking me seriously. For example how is it possible to have a consultation where  all the focus is on numbers and how the patient actually feels is glossed over!

Take care ladies and wishing you both well.

K.

[Penelope]

Hi Kathleen I get a constant sore throat if I eat chocolate or beetroot and as you know I have had thyroid issues forever so it may be linked to what you are eating.
Sorry to hear you are still on the medical thyroid treadmill.
Remember many many people say that thyroxine does not work for them at all.

Kathleen if you and others on this forum could click the link below you will read what we are trying to lobby the government with over thyroid and the medical professionals please sign it and you will be interested to read about Levothyroxine.If New Zealand can get this through then other countries will have a chance.

https://our.actionstation.org.nz/petitions/help-nz-thyroid-patients-get-treatment-that-works-1

Art mouse I have Hashimoto's that's when you swing between hypo and hyper and it's hell on wheels!🌹

[Penelope]

Stellajane that's what Hashimoto's is when you swing between both otherwise you are one or the other.🌹

[shoppingqueen]

Hi Kathleen
Sorry, I've probably posted a lot of info and not been v clear it's my mushy brain 
I was having TSH above the normal range  (4.0) last year and it eventually climbed to 5.8. No thyroxine prescribed at this point. I then became v Poorly (possibly viral induced) so the doctor then put me on 25mcg of Levo. So, I was regarded as borderline hypo and this was a trial. I was still extremely ill and it was upped to 50mcg and my TSH dropped to 2.9 on last bloods. As like you, I was still symptomatic, my doctor was saying everything is fine and I should feel well, which clearly I wasn't and he said they'd review in a year. I knew I wasn't well and saw a private doctor who referred me to private Endo. The private GP also did  antibodies and diagnosed Hashimotos. My Endo is checking on this herself to be sure and I'm seeing her tomorrow. She said If when checking herself she is sure I have autoimmune Thyroiditis/ Hashi she has said it's likely I will need more Levo- eg that my NHS GP would probably not wish to increase because of my so called normal TSH.
I noticed you saying your TSH was 19 as within normal range- did you mean FT4??
I?ll check in tomorrow xxx

[Wrensong]

Hi Birdy, just trying to catch up with this thread!

If you are hypothyroid, you might be iodine deficient.
There is an iodine deficiency test (a urine sample). But supplementing it is a risky business and could make things worse. Which is why anyone with an underperforming, or overactive thyroid, need medical supervision.
I have been reading about iodine deficiency and it's very interesting!

I agree (as mentioned earlier) that supplementing with iodine is not a good idea for anyone on replacement thyroid hormones.  It's said iodine deficiency is an important cause of thyroid dysfunction in some parts of the world but that here in the UK a balanced diet usually contains sufficient & as you say supplementing could make matters worse.  Hypothyroidism needs careful management in conjunction with a knowledgeable medic.

https://www.btf-thyroid.org/iodine-and-thyroid

Penelope - you mentioned having taken Lugol's iodine earlier. . .

Because I was sick for so many years I would use all sorts of thing s to help me.I must say the only thing that worked for me was taking 2 drops of Lugols iodine in water.
After two weeks I slept through the night and had more energy than I had had in years.By the end of the year Anxiety was non existent.
For those looking to try something natural.

You might be interested in this extract from the attached link:-

"Lugol's iodine is not a standard therapy and it is not recommended for the treatment of thyroid disorders. It can be used (under medical supervision only) in special cases and in some patients prior to thyroid surgery. It can be used to control thyrotoxicosis (hyperthyroidism) but cannot be given for more than 10 days and again, this must be under the supervision of a medical professional."

https://www.ukiodine.org/FAQs/

Stay safe everyone.
Wx

[Wrensong]

Hi Shoppingqueen, just trying to catch up with this thread.

My current TSH at 2.9 but am still symptomatic, not as severe but I'm not me yet still having some bad dip days- so I want to be at low end of TSH and upper for T4 until I stop increases in Levo- this is mentioned by the BMA and also cited on thyroid U.K. apparently this is where most hypos feel well.

The TSH at which patients feel their best is very individual, but as you say, many on replacement need TSH to be really quite low in order to be asymptomatic.  Before perimenopause I needed my TSH to be almost suppressed (1 or below) but as I've gone through menopause I now find I feel better when it's slightly higher - around 2-3.  I think Stellajane has also posted that she feels better when hers is mid-range or a little above.

So I think you're right to get specialist advice & to question what your GP has said.  Many patients do not feel well with a TSH that is simply within the ref range & imo should not be expected to continue on a dose of thyroid replacement that plainly doesn't control their symptoms.  Unfortunately many GPs have insufficient training on thyroid disorders so it can be a bar to achieving optimal health if we come up against one resistant to the idea that a symptomatic patient on replacement doesn't need their condition better managed.  This can mean a struggle for referral to an Endocrinologist but can be well worth the effort & stress involved. 

Wrensong, I hope all is well with you? 

Thanks, yes I'm lucky to have a lot of help from a top Endocrinologist who also oversees my HRT, so my thyroid condition is pretty well managed, though the HRT is still a work in progress!  Like you I'm far from loaded & have no medical insurance, but consider my expert Endo's help a luxury I can't afford to do without.  I go without other things in order to see him & have to have private TFTs to keep an eye on my FT3 as I also need to take Liothyronine which the NHS is pretty iffy about, though mine is luckily approved for NHS dispensing as bloods show I cannot convert Thyroxine well.  Health is simply too precious not to work at maintaining it!

Good luck with your Endo & please don't give up hope.  It should be perfectly possible for you to feel a lot better working in tandem with a knowledgeable & sympathetic consultant. 
Wx

[Wrensong]

Hi Kathleen

My TSH has reduced from 37 to 19 and because 20 is top of the normal range I am apparently okay. I have been taking 75 mcg of Levothyroxine for eight weeks and he doesn't think I need to change it but I need another blood test in two months time. The trouble is I still feel awful and my anxiety and tearfulness have ramped up.

I cannot imagine anyone feeling well with a TSH of 19.  I think your GP is mistaken to say it's within the ref range as I think the ref range for TSH usually only goes up to around 4 or 5 (my lab's range is 0.35 - 4.5), though it varies between labs & if I remember rightly used to go up to around 6 in years past.  With a TSH of 19, I suspect you need your Thyroxine dose increasing, but as you have not been on replacement for long it's also just possible it will come down further on your current dose.  In your position I think I would either try to see another GP now, or request referral to a good Endocrinologist if this is not possible or you make no further headway.  Please don't give up hope - you should feel way better once your thyroid is properly managed & the condition has had time to stabilise so that systemic changes from having inadequate thyroid hormone levels before diagnosis (and beyond) reverse.

I don't feel reassured that my GP is taking me seriously. For example how is it possible to have a consultation where  all the focus is on numbers and how the patient actually feels is glossed over!

I couldn't agree more & sadly many patients unfortunately come up against this situation as GP training in thyroid disorders is not extensive.  That's where a good Endocrinologist can be worth their weight in gold, but with a sympathetic GP who listens & is prepared to work with you (in an ideal world where the NHS is not so stretched), it should be possible to achieve optimal thyroid levels without having to pay to see someone privately.  I have sent you a PM.
Wx

[Artmouse]

Hi Kathleen,

I was taking Ferroglobin, which is an iron supplement with B12. My iron levels were always at the low end of the range when tested and I thought it might help with my fatigue and sleep problems (as low iron levels can effect this).  I think that taking it did help with stopping me getting ill so often, in conjunction with raising my thyroxine.   I notice that when I stop it my sleep gets even worse! 

It's easy to get anxious about which supplements to take when you are struggling so much just to feel normal.  In the end, it was like going down a rabbit hole and I decided not to take anything unless I'd had a test to indicate there was a potential problem - you could cause other imbalances and what with menopause going on as well it's hard to know what is making you feel rubbish.

My TSH was just above 5 when I was constantly getting ill.  I felt quite upset and angry when I found that taking more thyroxine was the cure.  Am very suspicious that the 'normal' range here is higher than in the US and the rest of Europe, why is this I wonder!?

I think the other thing to remember is to make absolutely sure you maximise the absorption of your thyroxine - don't take it within 4 hours of any supplements or other medication.  I'm being stricter on this now!

All the best!
x

[Wrensong]

Hi Artmouse

It's easy to get anxious about which supplements to take when you are struggling so much just to feel normal.  In the end, it was like going down a rabbit hole and I decided not to take anything unless I'd had a test to indicate there was a potential problem - you could cause other imbalances and what with menopause going on as well it's hard to know what is making you feel rubbish.

  I agree - that's the point I was trying to make a couple of pages back about iodine & selenium & explaining why I take the few supplements I do, with approval from relevant medics.

I think the other thing to remember is to make absolutely sure you maximise the absorption of your thyroxine - don't take it within 4 hours of any supplements or other medication.

Good advice Artmouse - can I add to take Thyroid meds first thing with a full glass of plain water then leave at least 30 mins before food & preferably an hour if practical.

Am very suspicious that the 'normal' range here is higher than in the US and the rest of Europe, why is this I wonder!?

  You're not the only one to wonder about that!
Wx

[shoppingqueen]

Hi Wrensong
Thank you! It seems we have a similar story! And I agree the cost of help is offset against trying to be well.  Otherwise, I simply won't be working and will not have any money anyway.
Like you, I think my Endo is going to look at the broad picture including my HRT and what we all need is one person with oversight of the whole picture. Unfortunately, GPS are after all general and will just aim to treat symptoms in isolation which is not where we want to be. Tight resources, but those ill with hypo should get automatic referral to Endo of symptoms persist. I've heard hyper get an automatic referral.
Hope you and all the ladies on here have a great day🙏 Let's keep hopeful  xx

[Penelope]

Hi Birdy I must tell you about to day.

It is 31 degrees here I am inside with the aircon on and I have a bright red hot face and my feet are like ice blocks they are so cold.
So I have improved from the last two times shivering on the couch for an hour and a half.
I'm guessing this is HRT progress.

Good news I have changed to a new doctor he is American and I see him next Tuesday.I understand he is very through!  Will get Free T4 and Free T3 done for sure.
Reading a lot on this forum I might ask for a test of testosterone I have never ever in my life had a libido or interest in sex!
Hope you are Well🌹

[Penelope]

Hi everyone if you have time please read the link below the more people who sign our petition in New Zealand and we get it through parliament then the uk can follow us.🌹
The front page is very interesting reading regarding the lack of doctor and specialist support and knowledge.If it that bad here then you can bet the Uk is just as bad.
Such a shame we have to fight just for knowledgeable medical care.
And thank you.

https://our.actionstation.org.nz/petitions/help-nz-thyroid-patients-get-treatment-that-works-1

[Penelope]

Thank you  Birdy appreciated so much.🌹

[shoppingqueen]

Signed Penelope xx
So frustrating- this is a global problem.
Just as an afterthought- been reviewing my TSH and FT4 scores since 2006. Well, my doctor ran 9 blood tests across that period and did both FT4 and TSH.
The last 2 however (when I've actually started Levo treatment) only TSH?? And I even specifically requested I get a reading of T4 now I've started treatment. So what's that about?
None of this makes sense.