At 66 my wife found out she had an overactive thyroid. After four+ years with a specialist hospital department, they decided she could no longer have the medicine it was harmful long term, after changing the dose she went into a bad way and they offered a nuclear tablet solution, it would work between 2 & four months, cutting out the overactive part. 2 months & 6 days it was if a switch had been thrown, she was normal, this lasted for 14 months, a wonderful time. Then as they warned, she might go into an underactive stage, this wouldn't be an issue as your doctor would be able to look after you !
Then we started the new phase of 25mgs of Thyroxin and the roller coaster of some good and then bad times. I had noted all her TSH readings since the start. She performs best at below 1.0, but when she starts to go under again, the blood tests by the NHS show Normal (1.- 4.5) In May this year she was at 0.88 and was fine until end of July when she started to go downhill, when tested, she was at 1.37. The Doctor said perhaps we could wait until the end of Sept and test again. I tried and failed to convince him he wouldn't believe me about her record. We waited during August as she just got worse, September 3rd Tested 1.8. Different Dr has agreed to move to 87.5 from 75mgs, which she's been on since April.
Her current symptoms: She awakes feeling fine, about 5.00am but within minutes she's suffering nausea, coughing and reaching. Last four days she's taken a nausear tablet, which helps to calm it and she goes back to sleep. later on awaking she just feels awful, lack of appetite, anxiety, sensitive. At times her skin feels as though it's burning. Spends the morning on the couch. Later in the day around 6.00pm she starts to feel normal apart from the loss of appetite. Due to our long term Dr cutting her hours last year. we have had to deal with three different doctors, each one starting from fresh (Very frustrating)
We're now looking at getting some specialist help, someone who really cares and can read all the tests needed to resolve her position. Current NHS system won't allow the Dr's any chance of understanding the issues, especially without information to start learning about a patients needs.
Our current increase from 75 to 87.5 (75 day 1, 100 day two) She moved to May 2019 to 100mgs, it lasted about two months and then, the Dr decided she was over dosing and dropped to 75mgs, then two months later, down to 62.5, I resisted 50mgs. !!
In between all this we've had counselling, for Anxiety, Depression and medication to help, read books and tried exercise, some helped but she has come off all that and now is solely on Thyroxin & Statins 10mgs.
Where do we go from here ?
If a Specialist, which one is any good ?
Written by
DavidMF
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saw this and as i have had RAI i clicked on to the site and wish i hadnt as it shows that having RAI can lead to cancer of other organs , the eosophogus being first on the list and i have been having a lot of pain and frequent problems with my eosophogus for the last couple of months. i thought it was to do with what i was eating but maybe its to do with RAI i had 9 years ago
When people post about the feeling of burning, especially of feet, I quite often post this link.
It is getting on a bit but nonetheless it does give an overview of the causes of burning feet. And I have not seen a more recent article which I could use instead.
Interesting some of the pointers, I had GBS 27 years ago, I do get hot feet/legs. My wife is more around the arms. Will be looking closer at the vitamins.
Never ever agree to dose reduction based just on TSH
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if levothyroxine Dose is reduced
Ask GP to test vitamin levels or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
What vitamin supplements are is your wife currently taking?
The fact she feels dreadful in morning and better in evening suggests adrenal insufficiency too
Anxiety is common hypothyroid symptom
When adequately treated we will frequently have extremely low TSH....if Ft3 is not over range she isn’t over treated....TSH is irrelevant
Guidelines on dose by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Slightly overwhelmed by the responses, as so much detail has been included. But VERY grateful for all the thought and effort it must have taken to collate as a reply to my plea for assistance.
To answer your questions:
Extra vitamins. We have always taken basic extra vitamins since our 40's. As things didn't improve in the last 4 years I noted we needed to increase the level of B's, which at the time seemed to help. A list of the tablets is attached (I hope)
We live in West Surrey and have had great medical support over the years. Though this seems to be one that is beyond a GP's normal area of expertise.
I'll write to Dionne for the recommendations, later.
Already taken the advice on taking the dose at night, this linked with the increase from 75 to 87.5.
One other item I've included results since 2017. Oct 19 T4 increased to 28.8 from norm of 17 Dr panic set in and Thyroxin was reduced.
I have two jpeg docs of the info you requested, but can't see how to attached them to this note. Advice please.
1) If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
2) If taking any supplements that contain biotin (eg vitamin B complex) it’s important to stop taking biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Low vitamin D and low B vitamins can cause burning feet - peripheral neuropathy
Admin at Thyroid UK have a list of sympathetic medics it would be worth asking for that and show them the post too so they know what the problem is. It sounds awful, Imagine the situation if you had not fought her corner - hats off to you!
lol OK I've never been good at remembering telephone numbers, and now that's spread to email addresses. Perhaps, subconciously, I just don't want to contact anybody! lol
😂🤣😂 I have a sister who has a phenomenal numbers memory and quite astoundingly she can recall them as easily backwards or forwards! We had a relative that knew all the log tables, square roots and and any cos sine etc you care to mention he never needed to look them up - useful for a maths teacher! He’s be driving and suddenly say see that number plate ahead, if you put a decimal point behind the 1 do you know what’s that’s the square root of? Then quote some weird four digit decimal. I presume it was correct it was such an utterly bizarre skill to have snd he was a genius with numbers. Perhaps it is some strange hereditary thing that I missed out on, but I’m good at things like dog breeds - anything involving a shape!!
Was your wife disgnosed with Graves Disease and treated with RAI thyroid ablation ?
This was my diagnosis back in 2003/4 at age about 56 and I too had this toxic substance in a drink and I too was told the anti thyroid drugs too dangerous to stay on long term, despite the fact I was well, continued to work have my independance, and live my life.
It is imperative that your wife is monitored and dosed on T3 and T4 blood test results, with a view to maintain both these vital hormones in the top quadrants of their ranges.
In primary care it seems only a TSH blood test is run, and this is totally inappropriate.
In Graves Disease it is known that the TSH is a very unreliable measure of anything, and shouldn't be used as the sole measure of a patients well being.
A fully functioning working thyroid would be supporting your wife on a daily basis with approximately 100 T4 - synthetic Levothyroxine + 10 T3 - synthetic Liothyronine, plus trace elements of T1. T2. and calcitonin.
T4 is a storage hormone that the body needs to be able to convert into T3 the active hormone that the body runs on and I read T3 is roughly four times more powerful than T4 and the average person uses about 50 T3 daily just to function.
No thyroid hormones work well is the core strength vitamins and minerals are not optimal in the ranges, so it is essential that ferritin, folate, B12 and vitamin D are at good levels, and not just somewhere in a range, and considered ok, and thereby not qualifing for a NHS prescription.
You may find you need to get these blood tests run privately and it will also be prudent to include the ferriin, folate, B12 and vitamin D so we have a complete picture and you will be advised of what it all means and what you can do yourselves to start to improve the situation.
There are lists of private companies on the Thyroid uk website, the charity behind this amazing forum, who will run the blood tests for you and this is exactly where I was a few years ago when I found myself on here, asking for help and advice.
The thyroid is a major gland responsible for full body synchronisation including physical, mental, emotonal, psychological and spiritual wellbeing, the inner central heating system and the metabolism.
Personally I simply believe that when there has been a medical intervention and either there has been a thyroidectomy or thyroid ablation both T3 and T4 should be on the patients prescription for if, and probably when, both these vital hormones will need to be prescribed to bring both T3 and T4 back into the ranges at a high enough level to offer the thyroidless patient a level of wellness that is acceptable and restores the patients health.
As you will see from the above your wife has been down regulated by some 20% of her overall well being by not have her own natural T3 thyroid hormone replaced and this is critical as it can act like the pilot light, to charge up her metabolism and convert the T4 into the T3 which is the active hormone that the body runs on.
Generally speaking in primary care a doctor can only prescribe T4 - Levothyroxine only.
Doctors did once prescribe T3 - Liothyronine, but the price of this hormone has risen in the UK to a level that CCG bodies feel is not justified, though T3 is still available in Europe for just a few pounds/euros.???
You may need a referral to an endocrinologist for a trial of T3 and it is very important to know who you get referred to, as CCG control of budgets stretches throughout the medical system, and you need an endocrinologist who is prepared to stand up for what he believes is the most appropriate treatment option for the patient.
There is a third option which is Natural Desiccated Thyroid which was the successful treatment for hypothyroidism for over a 100 years, before blood tests, ranges and Levothyroxine caming to the market, with Big Pharma in the 1960's.
NDT is pig thyroid dried and ground down into tablets referred to as grains, and contains all the same known hormones as a humans, namelt T1.T2.T3.T4, and calcitonin. Doctors are allowed to write a prescription for NDT but they need to be supportive of your request and go up against the local CCG to justify the prescription as NDT is a lot more expensive than T4 - Levothyroxine.
You might like to read around Graves Disease and the most well rounded website is that managed by Elaine Moore.
You might like to read around hypothyroidism and can recommend a book that is my goto :
Your Thyroid and How To Keep It Healthy by Barry Durrant - Peatfield who is a doctor who has hypothyroidism and who resigned from the medical profession.
I am now self medicating and buying my own thyroid hormone replacement as I was refused both T3 and NDT by my surgery and the one and only hospital endocriniologist I had seen in over 10 years since the original RAI treatment.
It's a massive learning curve, but you can get there, and just reading posts and answers on this platform will help you get a handle of all things Graves and hypothyroid.
My wifes cholesterol rose even after weight loss, (though only 60kl) to 7.8 at that she was given 10mgs of Statins. Don't feel they've been a problem, but after last year with her taking antidepressants and anxiety tabs, it got very confusing. All now stopped, much to the delight of us both.
I would recommend the work of Dr Kendrick on cholesterol and statins. ‘High’ cholesterol is not bad for us. I have read that any minimal effect statins have on health (very questionable) does not apply to women. There was a meta-analysis done a while back on all the statin studies and it concluded that there was a possible increase in longevity of 4 days over 10 years. Given the horrendous possible side-effects of statins this should have brought the doctors up short and cut the prescription rate, but didn’t. I read a recent study about Covid-19 which stated that low cholesterol is not good when fighting the virus. When told that my cholesterol level was high, about 6 I think, I replied ‘good’ and my GP shut up. High cholesterol being bad is a myth perpetrated by the medical profession at the behest of the pharmaceutical industry.
I agree about statins. I took them for a few weeks and in that time I became unable to walk to the bus stop across the road where I previously wouldn’t have dreamed of taking the bus into town. I went from being a great walker to being a shadow of my former self. I also became really depressed, I had a feeling of wanting to curl up on a corner and be alone. So I stopped them and I’ve refused them ever since.
Anyone who reads these posts regularly will have heard me comment that as my TSH has increased so has my cholesterol, when my Graves was at its worst and my TSH was below the lab range my cholesterol was the lowest it had ever been. I told my GP I thought there was a connection between both and she just smiled and said ‘mmmm’. I’ve since investigated and my thoughts were correct.
I feel very sorry for your poor wife David. I was told the same thing when I had Graves - comments such as ‘Its just a little pill’ illustrated by the doctor holding an imaginary pill between her finger and thumb to show me how little it was. Her next comment when I said I didn’t want it because I didn’t want to become hypo was ‘Oh that won’t happen’. As if! I’d read enough on here about people like David’s wife to know it wasn’t that simple. Fortunately I’m still in remission and haven’t had to fight to keep my thyroid.
Good luck David and wife, hopefully once you’ve got the list of thyroid patient friendly doctors you will make progress.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Anxiety is extremely common hypothyroid symptom
Depression is extremely common too when underlying ....so much so that psychiatrist can prescribe T3 for low Ft3
Never accept dosing of levothyroxine just by testing TSH.
TSH is especially unreliable after Graves’ disease
Many, many patients when adequately treated with good Ft3 levels and good Ft4 level will have TSH well under 1
Poor conversion of Ft4 to Ft3 is common as we get older and with Graves’ disease (or Hashimoto’s)
Frequently patient need addition of small dose of T3 alongside levothyroxine.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many especially after RAI
That's really spot on, so much equates to how my wife has been responding. Also Oct. last year the Dr panicked when the T4 went to 28.8 TSH 0.48 and immediately cut to 75mgs from 100mgs. I have written to Dionne, but will also write for Prof. Toft article. Many thanks for all the assistance and detail, feel I've just gone from rung three to level 6 in one day. A lot to take in, she did have Graves and always feels fine when TSH is below 1.0
Pennyannie What a fantastic reply you've created and so much detail. You have summarised in detail many of the thoughts and actions I've tried to take, but often thwarted by the Gp. I've been using HU for the last 5 years after contracting PMR, unfortunately at times I've dropped the baton when trying to keep myself under control. Then find myself catching up, add doctor changes and a wife who sometimes overules my thinking and believes the Dr, not an easy ride.
I followed the NICE rules when it dropped synthetic Liothyronine due to the price increase and still don't understand why the purchasing side hasn't gone elsewhere, feels like a contractual issue that needs resolving. All brought about by a buy out of the original company, they then became the only UK manufacturers and screwed the NHS.
You and Slowdragon have given me so much to do, my sincere thanks for giving me a lifeline to an improvement for my wife's suffering.
Just so you know, if you want to reply to one individual you need to press the reply button under their name : I just came back on here to see what other people had said to you - loitering with intent - !!!
If it's a general reply forum members, especially the key people and Admins rarely " look back " owing to the volume of posts coming through asking for help : other forum members like me, tend to cherry pick where they think they might have something to offer .
So, if you want someone's attention you need to press the blue reply button and before you starting writing their name should come up acknowledgeing who you are writing to :
Yes, well the T3 debacle has now been kicked up into the House of Lords - it's despicable, but there you go :
There's another article written by Prof Toft which is on here in full somewhere and basically says everything about where we all are in this thyroid issue :
Sorry I can't do cut and paste unless it involves actual scissors etc :
Thyroid Hormone Replacement - A Counterblast To Guidelines : December 2017 and printed in the Journal of the Royal College of Physicans of Edinburgh, and written in his final years before retirement from the NHS :
There is one particular statement that really hit home for me in which he states :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyoidism. "
It a very interesting article in what it does and doesn't actually say : ultimately we have to be our own best advocates which is quite diffucult when brains are frazzled and probably prescribed anti depressants rather than the appropriate thyroid homone replacement.
Yes I know as I'm in the same boat - diagnosed Graves 2003 and had RAI in 2005 :
Your wife still has Graves, it's an auto immune disease and as such it's for life :
Elaine Moore also had RAI back in the late 1990's and finding no help with her continued ill health started researching the disease herself - her first book entitled Graves Disease - A Practical Guide was my starting point time to turning things around for myself : she is now leading authority on this poorly understood and badly treated AI immune disease, with several books published and the world reknowned website I mentioned to you in my first reply.
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