Following on from my itchy/tingling feet I had a gp call. My tsh & t4 came back as 0.01 and 15.7 (8-19.1). She wanted to reduce thyroxine. On 150mcg which seems about right for weight. I said no as I feel on the whole ok. I have lingering fatigue, slight coldness, exercise intolerance and nit always pooing regularly. These have increased a bit lately. I have been supplementing b vits and d! The Dr tested celiac, diabetes which came back fine. Serum B12 which came over range so she asked me to stop this. ( I had stopped a while before for the thyroid tests anyway) cortisol 314. There was no range given for this.
She said there was no organic reason for my symptoms and was inclined to diagnose functional neurological disorder! I'm not happy with that. Can I refuse this? Will I then get labelled as uncooperative?
Also. I know my tsh is suppressed, but do you think there's room for a tiny increase? I do worry about long term suppressed tsh but I didn't start to feel remotely normal until I was on a high enough dose that suppressed my tsh.
I speak to gp on Wednesday. Advice on how I should proceed would be welcome.
Thanks in advance.
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BiscuitBaby
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Refuse the diagnosis and ask for FT3 to be tested at the same time as FT4 and TSH. My guess is that you are a poor converter of T4 to T3 and your FT3 will be low in range. Low T3 causes symptoms regardless of low TSH and high FT4.
Chances are that even if your GP requests FT3 test the lab may refuse to do it. They can override a GP request if the other tests are in range. At my surgery the lab will test FT3 if TSH is suppressed and your TSH is suppressed as it's less than 0.1
If you can't get your full thyroid panel with your GP then I would suggest you do it with a private test that the NHS offers from Exeter hospital with a fingerprick test - see MonitorMyHealth here:
Hi SeasideSusieThank you. I'm not sure that they will test t3. I'll ask. I did my t3 a while ago and it was OK. Both at that time were high in their ranges. T4 has slipped for some reason. Is that normal for it to slip back? I wondered whether my conversion has changed ? Can it do that? I'm sorry, my fuzzy head doesn't allow me to take things in easily and I really have noone else to ask than on here!!! Thank you for reply.
With Hashimoto's there will be fluctuations in hormone levels/results/symptoms with Hashi's activity.
Conversion could possibly change, mine did. I was fine on Levo only for over 20 years then lots changed including poor nutrient levels which are needed to be optimal for good conversion to take place.
Looking at previous posts you have Hashimoto’s and extremely high thyroid antibodies
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
HiThank you. I did try gluten free but it made my constipation worse. I think the increased fibre was what did it. However it was a while back when I was feeling worse. I'm in the process of giving up caffeine. Next on my list is refined sugar. I also weighed myself this morning and I've put weight on! I just hate the way you have to do it all yourself. I'm really nit sure what I wouod have done had I not found this forum. I think when I address sugars, gluten will be included as a by product. Thank you slow dragon I'll look at those links later. Your time is much appreciated.
Magnesium supplements can help improve constipation
Calm vitality magnesium powder is cheap and easy to use. Magnesium supplements must be minimum of four hours away from levothyroxine, best taken afternoon or evening. Start on small dose and increase until get desired effect…too much can cause diarrhoea
Thank you. I use magnesium salts in the bath. Stupid question but will that affect how much I take??
Thank you for reply. I'm in awe of everyone's knowledge. I know everyone has suffered to get to where they are now and to have the knowledge you/they do and I really appreciate this forum. I wish I knew about it before.
I take it in the morning. I don't 3at breakfast anyway. I don't take coffee in the morning but giving up on caffeine now. I was taking it when I woke during the night but I'm trying to not get up as it takes ages to get back to sleep.
Yes, I can. Good thinking. It might help with sleep too. What's the best one to get? Are there any that are better than others? I'm not sure how often I can say thank you!! But I do appreciate all the advice.
Is "functional neurological disorder!" an actual thing, or another way of saying "It's all in your head"? It sounds sneaky....like window cleaners calling themselves glass technicians.
Oh, here it is
NHS North Bristol, Functional Neurological Symptoms:-
This problem has been around for a long time, for most of history it was called “hysteria” WTF
HiThank you. Yes now I'm angry. After the consult I cried! She actually did end the sentence with "but it's not all in your head". All you hear then is in your head. She then said " I know you must be frustrated that you're not being believed". Until that point I didn't think I wasn't being believed. Now I do!!!! I'm just kind of sick of it now. Its too hard to fight. I feel like I'm asking the Dr to prescribe illegal Street drugs not a hormone my own body can't make itself!!! I do wonder how many GPs out there have thyroid problems and how they get treated. I will challenge diagnosis but I'm not sure what good it will do. Thank you for getting back to me. I appreciate it!!
I think many of us have probably felt like this at some time or other.....you look back and think "That's not like me, but no wonder I cried, I felt so unwell for so long, and so, so vulnerable."
I think that it might be a good idea to change GP's.......this one is not going to help you when she's not listening to you at all.
Hi biscuit baby, this has happened to me as well. I have no treatment for my thyroid but was told by a private endocrinologist I need Behavioural therapy to deal with it! Yes, I cried, no I still have no treatment almost a year later. I an going down hill every day.
Missreva I'm sorry you're no further forward. It's a shocking diagnosis and a cop out I think. I think someone made it up to apply to anything they can't solve so they don't have to keep looking. Meanwhile we suffer! I hope you get answers soon.
Hi nellie237 I just read that link!!!! I feel more angry now than I was before. There's no way I want that on my records!!! Its all cognitive based. My problems are real and caused by a real problem not in my head!!!
I was shocked/appalled. Reading between the lines, it starts off by saying that the problems may resolve themselves with a bit of cbt...........if that doesn't work we'll take you in for a few weeks while we concentrate the brain-washing.......then we'll discharge you without any follow up.
I was dumbstruck by your GP's statement " I know you must be frustrated that you're not being believed". and I'm sure that I would have been too stunned to respond at the time. I would be kicking myself later. She should have stopped speaking at "frustrated", the rest of the sentence is just plain nasty. GP with a personality disorder?
I had a Paramedic with a personality disorder. ECG taken in the ambulance handed to my daughter as the paramedic said "Keep this for the next crew that arrives, so that they know what is normal for your Mum" I'd never called an ambulance before, so it wasn't like I was a frequent flier. I'd had a heart attack. When we looked at it later, it said "Check for blockage LAD." spot on.
The best person to help you is somebody who believes/understands/listens to what you are saying, and that's certainly not this GP. There have been a couple of posts recently where posters have changed GP and got a much better out-come. Don't give up. 🤗
HiI'm not giving up. This is the second horrible gp. The first one told me that I was 45 andight just have to learn to live with it. This was during the consult where I told him I thought I was dying. Just after I refused antidepressants telling him I was ill not depressed. Why does it have to be such hard work?? I only want my health!!! I don't think it's much or hysterical of me to ask that!! I hope you are well now. Thank you for taking the time to reply. I appreciate your supportive words!
Hi, might be a good idea to check your B vits. Some complexes can include quite a lot of B6 and it is one which can cause neuropathy if too high as well as too low. Some are more sensitive to it than others. Also, which type of B12 - if your serum was high, you may not be using it well and a different type may suit you better, or possibly the addition of a small amount of methylfolate. If you've been taking zinc, that could push your copper down which can also cause neuropathy. Low iron too. How is your blood sugar (the most common cause and will make it worse even if it is not the cause). If you are going to be working on diet and gluten, that should improve anyway, but worth some thought, especially given its impact on thyroid function. An anti-inflammatory autoimmune type diet is well worth a try (I found it so, anyway). Gluten free products don't suit everyone, as we can react to the starches that are used instead (like corn, tapioca, rice or potato) and I ended up stopping eating the lot. The magnesium should help with the constipation as well as helping you use the vit D better.
Thank you for your reply. I was supplementing my b vits but stopped now. I've not even considered zinc and copper. Once I've addressed coffee and sugar I might try gluten free. Thank you for your advice.
I was diagnosed this also. I was not happy about it. It turned out that I am a poor converter of T4 to active T3. You’ll definitely need to get your T3 checked at the same time as T4 and TSH to check how you’re converting. You could do the DIO2 gene test through Regenerus Laboratories also as if positive this would indicate why you could be a poor converter too. I got my diagnosis changed. Basically if they diagnose a person with neurological functional disorder it means they have no clue and you will not get any further treatment. I went private to see a brilliant endocrinologist who diagnosed me in two consultations as being a poor converter. I’ve subsequently had a letter from the Walton Ctr who originally diagnosed saying it wasn’t that and evidence now has proven a poor conversion from T4 to active T3.
HiThats what worries me. I get that on my file and they don't bother looking fir anything else. It's not like I have one symptom in isolation. I am seeing her tomorrow. I plan to ask what my options are as far as treatment is concerned. Probably nothing!!! I'm not even sure if I test t3 myself, they will do anything about it. I'll have to wait see what she says.
Sounds like your doctor is not really listening to you. I know where functional neurological disorder is coming from but it means that the doctor is not going to look any further for another solution. If you find that you are getting nowhere, try to find a doctor who is more open.
Thank you. This is my third gp. Only by default. I was very happy with 2nd one. She was treating by symptoms. Don't know where she's gone. This one wanted to follow up on the tests she asked for. I'll not be going back if I can help it. I just hope I don't cry in the room. It's an actual face to face. She wants to look at my feet!!!
Strongly recommend getting FULL thyroid and vitamin testing……just testing TSH and Ft4 is completely inadequate
Like McPammy I tested positive for Dio2 gene variation…..now on T3 prescribed alongside levothyroxine initially via private consultation and prescription….now on on NHS……a complete transformation
But BEFORE considering adding T3….we need vitamin D, folate, ferritin and B12 optimal…..frequently strictly gluten free diet helps or is absolutely essential. You don’t need any obvious gut issues….I had none ….turned out gluten or wheat was a huge issue
More on my profile
Come back with new post once you get TSH, Ft4 and Ft3 tested, plus thyroid antibodies, vitamin D, folate, ferritin and B12
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