I hope you are well and can offer me some help please? On the 26/7/2022 my wife's levels where TSH 0.02 range .27-4.2
T4. 20.2 range 12-22
T3 4.8. range 3.1-6.8
She was then taking 75mcg one day and 100mcg the next. Her body weight suggested that the correct dose should be 108mcg. She has suffered various symptoms and was diagnosed 20 years ago as being Hypo. Her vitamin B12, D3 as well as Ferritin and Folate are all good.
As a result of these test the GP said she was over medicated and was only interested in getting her TSH in range. Nothing else matter at all. I then listed the major symptoms including the recent loss of an eyebrow. GP then ordered a whole series of tests to show us that it wasn't thyroid it was something else. All test good or very good as of the 21/9/22
TSH 0.5. range .27-4.2
T3 3.9. range 3.1-6.8
Sacrificing T3 to get TSH in Range
Then asked for another call with another GP and has a very similar call where TSH was the only level of interest. I stressed that Nice stated that the first consideration should be symptoms not levels and listed the symptoms. The GP response was that these may be caused by her being over medicated. I strongly disagreed with this but he insisted on dropping the dose to 50/75 on alternate days. Madness. I told him that I do not believe my wife converts T4-T3 and needs T3 to be added to her perception. This was ignored. My wife agreed to the GPs requested but I pushed him as said that the result of this I believed that there would be a further reduction in T3 and worse symptoms and if that was the case I wanted him to refer her to an Endo to consider adding T3. He just said let's see what happens.
Massively frustrating. Suspect even if I am proven right we won't get a session with an Endo. Suspect I will need to get hold of some T3 privately.
Has anyone got any arguments that I can put forward to a GP that might work. I find it scary how fixated they are on TSH levels. Just saying the symptoms are probably caused but something else against the evidence is bizarre.
Thanks a lot
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If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
We have struggled to get the same Levo as the pharmacy will send us what they have. I have recently asked the surgery to ensure they insist on Northstar which seems to go down best. Let's see if that works.
The antibody tests have been done several times in the past and always return low results so I do not believe her hypothyroidism is autoimmune.
She recently had a DI02 genetic test from Blue Horizons which had a red flag on COMT, 5 yellow flags and 4 green. I had no idea how I was going to have that discussion with the GP. Not sure how relevant they are?
We have not tried splitting the dose but will try.
She takes B12 and Vit D. Healthy diet of meat, fish, eggs, veg and fruit. I am basically carnivore so her diet is heavy on the red meat and chicken. The diet is naturally gluten free but the occasional slice of toast does get through with plenty of butter.
We live in the Bath area and I have confirmed with one consultant endo a Dr T (edited by admin) that we will prescribe T3 through his secretary. He is not on the list from Thyroid UK he works both NHS and private in my area so I may see if we can get an appointment with him.
I am an avid reader of this site so well aware of test timings. I have been using Monitor my Health as with the discount code we can use for this site it is pretty inexpensive. As it is an NHS Hospital I believe it give them more credibility for the GP
I will dig out the Folate, ferritin, Vit D and B12 levels and add them later.
Thanks for your help and support. Much appreciated
Thanks Slow Dragon. Just a thought! Is there any science that shows what happens to TSH in similar circumstances if you add T3 to T4. If TSH is their target if you add T3 what does that do to TSH levels.
Thanks SlowDragon, I need to provide you with the vitamin results I will do that in a bit. Just one last request. Are there any papers on the long term effects of low T3. I suspect that reducing the does to 50 every other day will drag the T3 levels below range and I would like to prepare a response. I will push very hard for an appointment with an Endo and now have 2 options in my area. Thanks for all your support
Be aware Northstar only package medication. Levothyroxine is likely to be Accord/Activis. The Northstar omeprazole is often Sandoz. Look at the blister pack to confirm this
Thanks Jackobee, you are correct. Just checked her new 50s are Teva and the 75s are Accord. I will see if the GP practise can dictate Accord as this seems to be the best one. Much appreciated.
The GP response was that these may be caused by her being over medicated.
Good grief... wrong diagnosis!
I sense your frustration...fixation on TSH is the cause of many patient's ill health
TSH is a pituitary, not a thyroid, hormone. It reflects the overall level of hormone in the serum , but it does not (obviously!!) show the level of each hormone ( FT4 and FT3) This fact is not recognised by most medics and is the reason behind that inaccurate statement
Your wife's FT4 is relatively high which is why her TSH is low
The pituitary is sending a signal ( low TSH) to the thyroid telling it there is plenty hormone ( actually T4) and not to produce more hence misunderstood TSH. Low T3 isn't signalled!
That low TSH is what causes medics to "panic". They imagine all manner of horrors eg stroke, osteoperosis.
This concern is misplaced
To the detriment of patients, medics sideline FT3....which is bizarre given it's importance to the body.
FT3 followed FT4 are the important markers....but I suspect you have long ago worked that out and are therefore more knowledgeable than this GP......they won't like that!
Your wife will not be overmedicated unless her FT3 is over range....it isn't even close!
T3 is the active thyroid hormone and for good health must be available in a constant and adequate supply.
Low FT3 = poor health
Her FT3 is abysmally low and that, combined with her symptoms, is a red flag for hypothyroidism/ undermedication
Madness indeed!
Her T4 to T3 converson is poor evidenced by high FT4 with low FT3.
She would benefit from the addition of a little T3 as you say....
convincing medics may be a battle!
Just saying the symptoms are probably caused but something else against the evidence is bizarre.
Bizarre indeed!
I'm not medically trained ...just another thyroid patient who has had to read and learn because medics failed, for decades, to work out that I have a form of Thyroid Hormone Resistance and need a supraphysiological dose of T3-only to function.
The current state of thyroid diagnosis and treatment, especially for the cohort who do not readily respond to levothyroxine, is a scandal of monumental proportion.
Your wife deserves better!
Push for an endo referral because reducing her dose is detrimental to her wellbeing.
I suspect your wife may be more receptive to T3 from an endo but self sourcing may be the only way.
Perhaps the following might provide some ammunition.....
I find myself writing pages of notes before a call with the GP preparing all these arguments but a 10 minute call just isn't enough time to have a decent discussion. When you say I don't agree with you for this reason you get a very defensive response. I am not sure how to provide the GP with all the great information and references I have access to from this site.
I am keen to support the Thyroid UK efforts for change. Not sure how as yet. Thanks for your response.
Have you thought of writing a time line to include scientific references to back up your point of view.
I fully understand your situation and it is a nightmare to convince medics who are blinkered by useless guidelines and terrified to diverge from them....ironically, they are guidelines not rules. What happened to professional judgement!
The science backs up new thinking but (thyroid) medics cling to the past ....they would have to admit they have been wrong for about 40 years, if they altered course!
If your GP has already failed to open his mind to other treatment possibilities then your wife's health comes first.....take control. You may not have more luck with an endo in any case....but this is worth exploring because that retains NHS support/care
Many of us are forced to self medicate out of sheer desperation....what other disease is so badly treated. Had I not found this forum I may not be here now.
We didn't choose to be ill but so often we are treated as if the debilitating symptoms are all in our mind....not only wrong, but insulting and potentially dangerous.
The endo I saw dismissed my suggestion of RTH and insisted that I only need Levo....he was wrong on both counts. Levo had left me barely able to function.....so I walked out.
I have the Dio2 polymorphism/ homozygous which means my conversion is particularly poor...confirmed by research
My GPs could do nothing so I explained to them ,in writing, what I intended to do, and why....with scientic references. I quoted Patient Autonomy and said I did not wish to be without NHS support but that to achieve any quality of life ( life indeed) I had no other option left.
This is in my medical notes
i now self source T3 and self medicate....and have improved. My GPs saw this and now leave me to manage my thyroid health. This makes no difference to other medical care. I have confirmed that I take full responsibility for this....to reassure them they won't be hauled before the GMC should, in the unlikely event, T3 kills me in their care!
It is beyond madness....and thousands of us are in this situation
To date lengthy petitions to both Westminster and Holyrood have had little impact because until (most) endos come off their high horses, open their minds and swallow their pride before walking a different route....little will change any time soon.
You could write a letter to the GP including all this info , many of us have have a named GP in the NHS. Send it for their attention. I've done this myself when there's a lot of information to impart, too much for a short phonecall. Or if your practice has email you could do it that way.
You have described exactly what the reality is when up against a medical professional with limited time, resources and knowledge.
Your experience is that of many thousands of patients, mostly women, who get knocked back and encouraged to take an ant depressant and allowed to believe it's all in their head.
Thyroid UK exists precisely because of the ' bad science ' surrounding thyroid treatment and supported me through when I was so poorly and unwell and why I'm now here giving back to others, where I can.
The guidelines are not fit for purpose and whilst we are ruled by a computer and no common sense applied as to one's medical history the only alternative, after self advocating and not being heard is to DI Yourself.
No one would choose to self medicate, initially it just feels so wrong, but it was the best decision for me and I now have my life back and just feel so disillusioned in the medical establishment.
I am sure you are the very kind and caring husband I replied to before. I am sorry you both find yourselves still in the same position as your last posting. However you describe your situation so accurately it could be my own efforts you are recounting. I remain in the same position because I keep giving the medics chances that for all the reasons on this forum, I just should not. It’s a big decision self-medicating and I am sure I will be doing it sooner rather than later. As someone else recently posted “It shouldn’t be this hard”. I agree and my sense is that when the decision is wholly mine and in my own time, self medication will be my route. The experience and support on this forum (including your own and your wife’s timely experience for me) is critical and I totally see where you are coming from. Thank you for posting.
In my experience no amount of research papers thrown at a doctor will have any influence on their decisions or the treatment of the patient (other than increased condescension, gas lighting or whatever method of choice to subdue the patient). Unless a knowledgeable (and fearless) doctor is found, it is up to you to find a way around the medical system and to improved wellbeing. Coming here is probably one of the best steps to take. I applaud you for standing by your wife and supporting her in her journey to better health. It cannot be overstated how invaluable it is for a patient to be backed (I almost want to say "protected") when navigating the medical system. People with a chronic health issue already have enough on their plate just from that. Advocating for themselves makes things even harder. Having somebody to speak up on their behalf takes a big burden off their shoulders. By standing up for your wife you increase her chances for improving her situation. Thank you!
I'd love to be able to help but I have had same old crap from my own GPs at 2 different practices for years. I am "on the list" to see an Endo - have been for over a year. I could have private FT3 test but it wouldn't push me up the list. No eyebrows, half a stone overweight, skin like a lizard, knackered; and it happens every time they do TSH - always too low so they drop the dose. Then it's a war of attrition where I make weekly appointments with every GP/locum until I wear one down. Pathetic state of affairs.
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Moved and now being denied T3
T3 Above Limit: Ok or not?
has anyone managed to talk sense into their GP when reviewing medication for hashimotos in the UK?
