Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Wobblybits on August 04, 2019, 02:24:35 PM
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Bit late to the party, but here goes.....be gentle with me ladies ;)
I'm 56, was having fairly regular periods up to last year, but nothing since then.
Weight wise I was always slim right up til my 40s - 5'6†@ 8.5st. Had my only child at 40 and my general weight upped to 10.5st. When about 46 I was starting to feel very sluggish, depressed and my weight was rapidly increasing to its top at nearly 13st. Was tested for underactive thyroid and started meds, building up to 75mg over the first year. Things improved over 12-15 months, energy levels got a bit better and weight levelled at around 11st. Maintained this with no particular dieting etc.
Recently, having hit meno, my weight has shot up again over the last 1.5 - 2 years as is again at 13.5 stones.
My thyroid meds have never been increased over the last 10 years, and my dr maintains that my levels are still within range. Most people i know with hypothyroidism have had meds increases and are usually on over 100mg. I've gone up 2 dress sizes and am feeling really low and depressed about it, I look 7 months pregnant. Nothing fits, I look like a demented Michelin man ;D
I eat fairly healthily, no junk stuff and don't have large portions. Being told to just “eat less and move more†by my gp is starting to bug me! Surely such rapid weight gain is not down to purely diet etc...
Anyone else here suffer hypothyroidism, does the menopause affect your meds, levels etc.
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Hi wobblybits, I'm sorry you feel so down about your weight, I empathise (on fast 800 calorie diet since Jan) got fed up with what I was looking at in the mirror, clothes shopping etc and also when reading up on menopause (I'm 41yr & peri) discovered weight loss can help alleviate some symptoms so I've been quite motivated to do it. I was also scared being menopausal & or starting HRT would make me put weight on but I seem to have steadily been losing weight (trying hard). I was diagnosed with hypothyroidism about 15 yrs ago, initially started on a higher dose and 3 monthly bloods but for the last 14 yrs I've been on the same dose 100mg. I get yearly bloods checked, have had them done recently since starting HRT as that seems to be the advice although I'm on patches & it seems to be oral that can affect thyroxine absorption. I don't specifically remember weight gain, however I have always been 'bigger' 16st 6 at heaviest, my biggest symptoms were no periods for a year & extreme tierdness, sleeping all day my days off.
I have only been on HRT for approx 4+ months now so still new to it & on my second regime for only just over a month so it might be too early to comment but I am feeling the best I've felt in over 3 years.
Do you have any other medical problems or take any other medications that may be affecting your weight? xx
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Bit late to the party, but here goes.....be gentle with me ladies ;)
I'm 56, was having fairly regular periods up to last year, but nothing since then.
Weight wise I was always slim right up til my 40s - 5'6†@ 8.5st. Had my only child at 40 and my general weight upped to 10.5st. When about 46 I was starting to feel very sluggish, depressed and my weight was rapidly increasing to its top at nearly 13st. Was tested for underactive thyroid and started meds, building up to 75mg over the first year. Things improved over 12-15 months, energy levels got a bit better and weight levelled at around 11st. Maintained this with no particular dieting etc.
Recently, having hit meno, my weight has shot up again over the last 1.5 - 2 years as is again at 13.5 stones.
My thyroid meds have never been increased over the last 10 years, and my dr maintains that my levels are still within range. Most people i know with hypothyroidism have had meds increases and are usually on over 100mg. I've gone up 2 dress sizes and am feeling really low and depressed about it, I look 7 months pregnant. Nothing fits, I look like a demented Michelin man ;D
I eat fairly healthily, no junk stuff and don't have large portions. Being told to just “eat less and move more†by my gp is starting to bug me! Surely such rapid weight gain is not down to purely diet etc...
Anyone else here suffer hypothyroidism, does the menopause affect your meds, levels etc.
Hi Wobblybits i have had underactive thyroid since birth (inherited from parents). I have only just started HRT (in April) and have just had a first blood test to check my thyroid levels (results not yet known) but I am not expecting a problem. I am the same age and height as yourself but am already 4 years post periods. My weight tends to fluctuate between 11 stone and 11 6. I need to lose a few pounds now. I find that I just can't get it below 11 at all. My diet is ok and I do a reasonable amount of exercise. Since the beginning of 2019 I have been taking part in a steps challenge with a Fitbit and my monthly average has been over 10000 steps every month. Some weekends I can do a lot more when I go on group walks. However the benefit to my calorie count only seems to be 2-300 kilocalories a day.
Maybe your problem is to do with insufficient thyroxine? I have heard of cases where a GP insists that levels are within range but symptoms indicate otherwise. I am on 150 mcg a day (note mcg not mg which would be extremely high). I used to be on 200 mcg but reducing it seems to have improved my tendency to get throat/chest infections too frequently.
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Hi wobblyibts - I'm hypothyroid too - on meds for 25 years, & well postmenopause. Not overweight - the opposite problem in fact - around 7.5 stones & 5' 4" though I am not overtreated. I would say please get an up to date TFT done if you haven't had one recently. Within range results are often not good enough. You may need an increase of Thyroxine if your TSH is not around 1-2. That's what they tell you to aim for on replacement, but some older women - me included, feel better when TSH is not quite that low, though I used to need it nearly suppressed when younger.
The correct dose for you should be the one that gets rid of your hypo symptoms i.e. your GP should be listening to how you feel & joining the dots, rather than sending you away saying "your results are within range". Some GPs know very little about thyroid probs - not their fault - they just don't get enough training & are so pushed that if they have no special interest in it they may never learn more than the absolute basics. So you may have to be a bit assertive. I would see if you can get your TFT rechecked & ask for all 3 components to be done: TSH, Free T3 & Free T4, though if NHS they will probably not want to do T3. It's just possible you are not converting the Thyroxine efficiently into the form the body can use (T3). 15% of patients don't & I'm one of them, so have to take additional T3, which makes a massive difference to overall health.
I take it you are not on HRT? If so, that may be increasing thyroid binding globulin (TBG) which leaves less thyroid hormone available for use. That's usually said to apply only to oral forms of HRT, but I've found I had to increase my thyroid meds on transdermal (patches) too.
If you can't get your GP to listen, it may be worth going private to see a good Endocrinologist if you can afford it. Menopause can really be a challenge for hypothyroid ladies, so my heart goes out to you.
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Thanks for your support...
I'm also on lisinopril, for high blood pressure, but on a very low dose. I started vagifem about six months ago, but other than that am not taking anything else (no hrt) as yet. Meno symptoms tend to fluctuate, get several hot flushes a day for a few weeks...then they subside a bit....then come back. Libido is non existent. Unfortunately I'm still working full time (need to pay the mortgage) and am desk bound, so very sedentary. But I do try and get a few walks in and do a couple of gym sessions a week (only started a few weeks ago)
I'm getting g really fed up of what I see in the mirror...it's not me....nothing fits properly. Clothes that I was wearing only last summer I cannot get into now....not just snug...cannot actually even do up the zips, buttons etc....
Just feel like a fat, frumpy, tired old woman....that's just not me!
I'm sure there must be more to it.....
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Why don't you try keeping a diary one with your meno symptoms/hypo symptoms & another with diet/exercise & see how things are & share it with the GP see if they see a pattern or any improvements that could be made, supportively not judgementally!! If you decide to follow a diet you need to find something that suits you as an individual, they don't all suit everyone depends on lifestyle & general health. x
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It seems to be common that GPs don't listen to patients - who continue with symptoms but blood restults are 'within normal limits'. What is normal might not be correct for sufferers. Can you be referred to an appropriate Consultant for discussion? Thyroid is a hormone? :-\ so it stands to reason levels may alter when a lady goes into menopause?
I despair at GPs that don't listen :bang: :bang: :bang:
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Exactly my thinking....the levels may be saying “within range†but if my functions are all over the place perhaps my body cannot process the thyroxine as before. When i first started with underactive thyroids symptoms my weight shot up over 18 months or so to the same level as now. My current diet is only about 1200-1400 calories per day , consisting of yoghurt, humus, veg dips during the day, and usually some kind of meat/fish plus veg, salad in evening....really don't see how I can reduce it further ! Drs don't have time to listen, just the text book.....if your overweight then eat less.....meanwhile the woman I see in the mirror is not me....I still feel me, but I'm looking at another person.
Do you think it's worth paying to get a private screening of bloods etc done to verify all levels? If the results say meds need adjusting I'm not sure I can continue to afford private prescriptions, check ups etc......can I insist my gp adjusts any meds as per private test results, if need be?
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A private TFT including TSH, Free T3 & Free T4 costs me £85. The NHS is reluctant to test T3 levels & this is essential for me because I am taking T3. My thyroid condition & HRT are overseen by a very good private Endocrinologist. Initially this was because I also have a pituitary abnormality & needed expert advice during a difficult & protracted menopause, but I find his support invaluable & have continued to see him. I am not currently working & on one modest household income, we can ill afford private healthcare & have no medical insurance, but I save up for it & consider it the luxury I can least afford to do without. I feel lucky to be able to do this & appreciate that many people can't.
If you can run to a private TFT your GP should be willing to enter into discussion about your treatment according to those results & do further TFTs on the NHS. TFTs should be carried out approx 6 weeks after any change in thyroid meds & again at 3 months, the same after starting any systemic HRT. Your Vagifem should not affect thyroid hormone levels.
I would put feelers out for whether your GP is supportive of this private testing approach before you arrange a test. If they don't seem to be, then I would try to see a more sympathetic GP in the first instance. You could ask for an NHS Endocrinology referral, but uncomplicated hypothyroidism is usually GP managed, so they may not agree to this.
A private Endo appt usually also needs a GP referral initially. If you feel this would be helpful I would google to find your nearest private Endo & look for any info on him/her or ask on here or a thyroid forum for a recommendation, stating your home area. A one-off private appt may be enough to get you on the right track & is likely to cost between £200 & £300, but you could contact the Endo's private sec first to get exact costs. Follow-ups usually cost less. The sec's contact details should be on the hospital website.
If you go private, make sure the consultant knows you have no medical insurance as he may want a lot of bloods done initially in addition to thyroid function, which will likely be expensive. He can ask your GP to arrange these on the NHS instead & you may even be able to find out from his sec in advance what standard tests he will want & get your GP to do these beforehand so you can take along the results to your first appt. The Endo will write to your GP with treatment recommendations & your GP should be willing to take over your care, with thyroid meds prescribed on the NHS.
However, if it turns out you need T3, the situation is a bit more complicated, as provision for this on the NHS has been withdrawn in some areas & your consultant would need to write stating that you meet the criteria for prescribing of T3 on the NHS. But hopefully you will not need T3 & it is likely just a case of tweaking your Thyroxine.
Wx
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Just another thought - your diet as you describe it doesn't seem to include much carbohydrate. A moderate carb diet is said to be necessary for efficient conversion of Thyroxine to its active form, T3 - so increasing carbs may help your thyroid function & ultimately weight loss.
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Thanks all ladies....it's nice just being able to sound off. All this, with the meno symptoms, plays havoc with your normal thought processes and leaves you not knowing what to think or do. I will take all you've said on board and try to find my way through the melee. It's just so difficult to keep pushing, this bloody meno strips away your personality, confidence and keeps laughing in your the face.....
I think I've really got the find a way of making sure my thyroid meds are correct, if they are, then I have to look at others issues.... :o
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:thankyou: Wrensong ........... a balanced diet really is important. We need calories to burn off calories. A [K]calorie after all is a unit of energy?
I feel muggy headed often so my thought patterns don't always run in line ::).
Why has important treatment been withdrawn, :rant: - this must affect 1,000s of people across the UK - would they withdraw diabetic treatments :-\
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A private TFT including TSH, Free T3 & Free T4 costs me £85. The NHS is reluctant to test T3 levels & this is essential for me because I am taking T3. My thyroid condition & HRT are overseen by a very good private Endocrinologist. Initially this was because I also have a pituitary abnormality & needed expert advice during a difficult & protracted menopause, but I find his support invaluable & have continued to see him. I am not currently working & on one modest household income, we can ill afford private healthcare & have no medical insurance, but I save up for it & consider it the luxury I can least afford to do without. I feel lucky to be able to do this & appreciate that many people can't.
If you can run to a private TFT your GP should be willing to enter into discussion about your treatment according to those results & do further TFTs on the NHS. TFTs should be carried out approx 6 weeks after any change in thyroid meds & again at 3 months, the same after starting any systemic HRT. Your Vagifem should not affect thyroid hormone levels.
I would put feelers out for whether your GP is supportive of this private testing approach before you arrange a test. If they don't seem to be, then I would try to see a more sympathetic GP in the first instance. You could ask for an NHS Endocrinology referral, but uncomplicated hypothyroidism is usually GP managed, so they may not agree to this.
A private Endo appt usually also needs a GP referral initially. If you feel this would be helpful I would google to find your nearest private Endo & look for any info on him/her or ask on here or a thyroid forum for a recommendation, stating your home area. A one-off private appt may be enough to get you on the right track & is likely to cost between £200 & £300, but you could contact the Endo's private sec first to get exact costs. Follow-ups usually cost less. The sec's contact details should be on the hospital website.
If you go private, make sure the consultant knows you have no medical insurance as he may want a lot of bloods done initially in addition to thyroid function, which will likely be expensive. He can ask your GP to arrange these on the NHS instead & you may even be able to find out from his sec in advance what standard tests he will want & get your GP to do these beforehand so you can take along the results to your first appt. The Endo will write to your GP with treatment recommendations & your GP should be willing to take over your care, with thyroid meds prescribed on the NHS.
However, if it turns out you need T3, the situation is a bit more complicated, as provision for this on the NHS has been withdrawn in some areas & your consultant would need to write stating that you meet the criteria for prescribing of T3 on the NHS. But hopefully you will not need T3 & it is likely just a case of tweaking your Thyroxine.
Wx
I once had an NHS endocrinology referral as an adult and it turned out that I got it solely due to errors by a secretary (or possibly a doctor) who had incorrectly written in the referral letter that I (and my brother/sister) had hyperthyroidism not hypo. I told the doctor that I definitely had underactive not overactive and was told that I shouldn't have been referred then.
As a child I had regular referrals to a hospital doctor every year.
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CLKD you asked
Why has important treatment been withdrawn, - this must affect 1,000s of people across the UK - would they withdraw diabetic treatments
Thank you for your outrage & concern for the subset of thyroid patients who need this medication. :thankyou:
This is exactly the question many hypothyroid patients & their concerned Endocrinologists have been asking. It is a very sore point with me, so you have opened a can of worms here :o!
It is apparently a matter of cost. Liothyronine (T3) has increased massively in price in the UK in the last few years. I believe changes in pharmaceutical regulations affected the manufacturing process & this incurred significant costs for the manufacturer, but I don't know the detail.
I was first prescribed T3 many years ago on the basis of unresolved symptoms on Thyroxine alone & bloods consistently showing I cannot convert Thyroxine efficiently. My T3 is always at or below bottom of ref range. QOL really suffers as a result. At that time it was still more expensive than Thyroxine but way, way cheaper than it is now. The hormone is much cheaper elsewhere in Europe, so that the NHS doesn't seem able to either arrange a contract for it to be imported or negotiate with the UK supplier to reduce the price, is something I don't understand. I believe the matter has been raised in the House of Lords, thyroid patient bodies have been lobbying for the reinstatement of T3 on NHS prescription & some senior Endocrinologists have also been working to raise the profile of the issue. I'm not aware of how much progress has been made recently - I did a search this morning & there was nothing that indicated the situation has been resolved.
So, in 2018 many CCGs across the country withdrew T3 from NHS prescription. I had been aware for some time of rumours there were plans to do this, but had not heard anything personally from my GP surgery or any other part of the healthcare system. Then last summer, I received a letter from my local CCG out of the blue - my first ever contact with them, telling me my case had been reviewed & it had been decided I was not eligible for T3 on the NHS.
I immediately wrote back asking who had reviewed it, as my GP surgery should have been well aware of my long-term need for T3, no-one had asked me about my history in relation to it, its beneficial effects on my health or severity & scope of symptoms without it. I apologised for needing the medication as I've long felt guilty that it costs the NHS so much but also stated that I felt compelled to contest the decision as I had previously been very unwell without T3 & feared for my future health without it. The hormone is very powerful & I currently only take a quarter tablet a day, though am likely to need to double this to my prescribed dose once blood levels of HRT build again & many patients need more than the relatively small amount I take. I received no reply to the letter.
My lovely Endo then wrote to the CCG on my behalf telling them I met the criteria for eligibility. They quickly reversed their decision, in my case, though I only heard about this as he kindly emailed me a copy of their response. My GP surgery has not contacted me about the situation, but I have repeatedly noticed on my repeat script request forms a statement to the effect that my thyroid situation is still under review. So there is the underlying worry this is only a temporary reprieve. As I had other major health issues to deal with for the whole of last year & the aftermath of those is still very much ongoing, I have not had the time or energy to pursue the T3 issue.
However, the national situation seems little short of scandalous & I worry about all those patients less able than me to advocate for themselves, not to mention those who can't afford a private Endo to support them.
A suggested "solution" has been for patients to import the cheaper T3 from Germany & many have had to do this if their CCG has proved intransigent & their quality of life without T3 is poor. There is still the issue of unfair cost to the patient, the inconvenience of having to source the hormone from outside the UK and a big question mark over what will happen post-Brexit. For these reasons I chose not to begin importing my T3 from Germany, reasoning if I did this it absolved the NHS of the responsibility for my future thyroid (& arguably systemic) health & should it all go pear-shaped after Brexit I would be left with no means of obtaining the T3 I need. I'm also not in a situation of being very comfortably off, so while I can scrape together the cost of the medication now, there is absolutely no guarantee I'll be able to continue to buy T3 for the indefinite future.
The decision to withdraw T3 from NHS provision is arguably also very short-sighted of the NHS on a long term cost basis, as patients who need the hormone - which has systemic effects, so many bodily functions depend on it - will inevitably get sick as their bodies struggle to cope & begin to malfunction in many ways. They will likely need (expensive) hospital treatment they would not have, had their T3 not been withdrawn. They may also become too unwell to continue working so their contribution to society will be lost. They may, sadly, even have a shorter lifespan as a result.
I can't see the sense or compassion in this, or how it fits with the ethos of the NHS as a provider of free healthcare for all (NI contributions notwithstanding). Here is a link from one of the patient bodies if you are interested. And still awake! Phew - another epic. Sorry!
Wx
http://www.btf-thyroid.org/information/liothyronine/397-liothyronine-dossier-2018
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Katejo - hyperthyroidism is indeed deemed worthy of referral to an Endo. I feel hypo patients should also be automatically referred on diagnosis, with a review within months to make sure they are adequately replaced. Then those who fail to thrive on Thyroxine should be referred back to an Endo, rather than GPs trying to manage a condition they have usually had insufficient training for. There is unfortunately the widespread belief that hypothyroidism is always easy to treat & that Thyroxine alone is enough for everyone. You will know from thyroid forums & lit that sadly, this can be very far from the case.
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Interesting that a monopoly is actually illegal in the UK. So how can NICE and the Government of the Day sanction one manufacturer for a medication that is essential?
Maybe now that we have a New PM :-\ :-X you should go straight to the top. Suggest it to your Prof., get him to draft a letter on your behalf that you can present to No 10 ;-) ......... can't remember the name of the Minister for Health but a copy to him/her too .......... working on the premise of 'if we don't ask' etc..
Surely correct treatment in any speciality means less spent down the line - or am I being thick as well as stupid :-\
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That is interesting CLKD - I had been told there was now only 1 manufacturer for the UK supply of T3 - maybe that was incorrect.
I've just done a search to see whether I can find out, but have not come up with the answer. So will delete that bit from my earlier post in case erroneous.
That's the other thing about T3 - there has long been controversy over whether it is in fact essential. Too upsetting to go into that here!
Too tied up with other health probs to take on the stress of writing to the new PM, CLKD & I trust that all that can be done by those senior Endos with the power to advocate for patients, is being done.
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Hi Wobblebits I am Ten days in on HRT.I have had thyroid issues all my life that have never been picked up till last month.14 years ago I found I had a double nodular goitre and I also had a baby with birth defects.Over 25 years my TSH 3 and TSH 4 have been in the normal range.my weight went up and down like a yo yo.So Please ignore them when they tell you that!The symptoms and quality of life I have had over those years have been horrendous.
Finally I asked to have a Thyroid antibodies blood test done.And bang diagnosed with Hashimoto's thyroiditis.Every symptom I had been feeling was real.
Anxiety
Depression
Panic
Heart palpitations
Feeling hot or cold
Fatigue
Sore joints
Are just a few of the symptoms
It beggars belief how many symptoms a person can have that doctors ignore before they put two and two together.Please just push and push you know how you feel honey xxx.