My GP doses according to TSH results disregarding any symptoms. Over the past five months I have had to change my dose several times 75, then 75/100 alternate days then to 100, when he saw my TSH was below the lowest level he put me back on 75 without discussing it with me, I had been on this level since last Oct with no change in my symptoms. After I emailed him we agreed to 75/100 alternate days again. After eleven weeks with no improvement, two weeks ago I upped it myself to 100 daily because my symptoms are becoming unbearable, and emailed him to inform him of this. non of these changes were made with adequate time scale between increases so no real time to see if any improvements. One was changed without any consultation with me beforehand.
Yesterday, the receptionist called me and said he could not authorise an increase in my prescription because I am not within the NHS guidelines for TSH, too low., He needs to talk to me because he thinks there may be another ‘issue at play’ , I was given an appointment for 25th September, I have only seven days Levo of 100 left, she said that was the earliest available. I rang this morning and got a cancellation for next Thursday.
I think the ‘other issue’ may be a pituitary thing so have done some searching to find out more about it. Good article by The Pituitary Foundation pituitary.org.uk/problems-w...
Does anyone else have any personal info on pituitary and how is it resolved.
If Ft3 is not over range you’re not over medicated
Ferritin is too low
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. "
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
was this test done as recommended and after 6-8 weeks on 100mcg
FT4: 17.7 pmol/l (Range 10.5 - 21)
Ft4 68.57% through range
FT3: 5.5 pmol/l (Range 3.5 - 6.5)
Ft3 66.67% through range
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you for the NICE guidelines, I knew I'd read that somewhere, its on my laptop but couldn't find it - should have used good old Google. Yes I will show gp this, I've already drafted my next email to him, and will enclose also the Pituitary Foundation info which also favours listening to the patients symptoms. I always follow the protocal for blood tests.
As you have Hashimoto’s now you have had coeliac blood test you can go gluten free
it’s ALWAYS worth trying this ……and dairy free in few months
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 and may slowly lower TPO antibodies
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and 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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Thank you SlowDragon, I started a GF diet four weeks ago so too soon to see any change. I like my bread and have always made my own so finding it a struggle to find GF flour, one bag I found had xanthan gum in it, can't see the point of using GF free flour when it has ultra processed ingredient in it. Also found out that Teva has mannitol in it which changes the gut biome, I'm avoiding this in future. Ordered Sarah Myhill's book which is coming today, maybe it has some ideas for food. I also have a problem with histamine which I also have to take into account, I know I can't drink wine because grapes are high in histamin - sad. In fact the foods which I know cause a problem with my gut are histamine high. I wasn't aware that foods with gluten caused me a problem but hey will keep trying.
It’s maddening when you can’t find GF foods that aren’t full of additives to make them palatable.
It’s best to steer clear of self-raising GF flour if you want to avoid Xanthan gum—it nearly always has it in but it’s the ingredient that can help to make things more bread-like (turns out it’s gluten that gives bread that yummy mouth feel, dammit. And stops everything crumbling like cake…).
You should have more luck with plain GF flour—that tends to have just the milled ingredients and tends to be a blend of millet, rice, tapioca and corn (in various combinations).
Hi Slowdragon. I always love your advice emails. Very informative.
However I just want to comment that they can test for Gluten Sensitivity (that's what they call Gluten Intolerance) but it can only be done at a specialist centre for Gluten Ataxia. One clinic is at Sheffield Teaching Hospital, (I attend this one) the other is in London, not sure where. It's actually a series of specialist tests that they run. They also test genetics.
GP would need to refer.... Not sure of the criteria but I met it!! I completely appreciate there will be limited access to this service but thought I'd mention it.
Ooooo.... Not good. Am not surprised though as I tested negative twice for Coeliacs (via GP) but I am definately completely intolerant of gluten. Because of those test results I carried on eating it thinking it must be something else I'm reacting too... Lol.
Thing is my neurologist did his more specialist tests and of course they came back negative because by then I was on a strickly gluten free diet for over a year out of necessity. Positive for Coeliac gene. I felt soooo I'll and lost over a stone mainly cos I couldn't eat much at all until I cut the gluten... Forever banished!!
And the neurologist said I had brain damage typically seen in gluten Ataxia.... In my balance section of the motor cortex of the cerebellum.
I think the ‘other issue’ may be a pituitary thing so have done some searching to find out more about it.
I very much doubt your GP would know anything about a pituitary problem! Or even where to find it. So, I doubt it's that he wants to talk about.
Very difficult to assess a putitary problem once you're on thyroid hormone replacement - especially if you have Hashi's. Do you have a copy of your blood test results from when you were diagnosed?
Does anyone else have any personal info on pituitary and how is it resolved.
There are quite a few people on here who have managed to get diagnosed with a pituitary problem. And a lot more that can't get diagnosed because they have a pituitary problem. But either way, it cannot be resolved. You just have to go on the right dose of thyroid hormone replacement like every other hypo of any kind.
Your problem is that you have a very ignorant doctor dosing by the TSH, which is always a problem. It always leads to the TSH seesaw - TSH too high, increase dose: TSH then becomes too low, reduce dose: TSH then becomes to low etc. etc. etc. ad infinitum. The continual upping and downing of your dose is bound to have a negative effect. Plus - once again - when you have Hashi's and levels fluctuate anyway. But, your doctor really does need to learn the difference between a 'guideline' and a 'hard and fast rule'. I always think doctors should be issued with dictionaries on graduation. Take SlowDragon 's advice and quote the NICE 'guidelines' back at him.
Yes Greygoose I thought that would be the answer, but I don't intend staying on the seesaw very long. However I will give him the benefit of the doubt and see how I get on with the appointment on Thursday. If it is a pituitary problem my guess is that he will refer me back to the Endo, also been down this route before only the GP who referred me last time wrote instead of just booking an appointment, she said they have to reply to the GPs within three weeks, so I will insist he writes and doesn't just book the appointment. Whenl I saw the Endo last year she did say that if increase in Levo didn't help with symptoms then a trial of T4/T3 for three months might help. However, she did say she cannot prescribe this, the GP would have to do this. What a state of affairs when a consultant cannot prescribe treatment. I'm not sure if this is still the situation, I understand that some ruling has recently been made whereby if T3 is needed then it must be prescribed. But I doubt my GPwill be up to date with this either.
Blood test done 22.11.19 at my daughters doctor where I had to stay for a month when I came back from Kenya because I was too ill to go home.
T4 8.4 (7.00-17.00) TSH 6.7 (0.20-4.50) B12 143 (145.00-910.00) Folate 24 (3.00-20.00) I was diagnosed as 'borderline hypothyroid'. I first went onto Levo in May 2020
I have already drafted an email to another surgery I could register with putting out feelers to see if they have any GP who understands anything about Hashimotos. I don't want to jump from the frying pan into the fire. The GP in charge there is Asian, I have always had a lot of respect for the Asian doctors, several occasions they have come to my rescue. I suppose this comment may be redacted on the grounds of racist remark! Thank you for your help.
If it is a pituitary problem my guess is that he will refer me back to the Endo
But how is he going to find out if it's a pituitary problem now that you're on levo? The only way is to test other pituitary hormones, and as far as I know, a GP cannot do that. It has to be an endo.
However, she did say she cannot prescribe this, the GP would have to do this.
I think she's a little confused there. I don't live in the UK, but as I understand it, from what I've read on here, the endo has to prescribe the first 'trial' (which is a nonsense, anyway) of T3, and if it 'works' (!) then the GP is supposed to take over prescribing. But the endo cannot prescribe it long-term.
T4 8.4 (7.00-17.00) TSH 6.7 (0.20-4.50) B12 143 (145.00-910.00) Folate 24 (3.00-20.00) I was diagnosed as 'borderline hypothyroid'.
They do make me cross with their 'borderline' nonsense. You are technically hypo when your TSH reaches 3 - and in some countries they would treat at that level. But, in the UK, they like the TSH to get to 10 before they will prescribe, so this 'borderline' business is just an excuse not to treat. And, yet, they will say that a below-range TSH - even slightly - is 'borderline' hyper, even if the Frees are low! There's something not quite right and totally illogical there.
Your B12 was dangerously low. Have you been tested for Pernicious Anemia? You should be on B12 shots with a low B12 like that. With that range, it should be at least over 550.
Hi Greygoose, that blood test was done in 22.11.19 when I was first diagnosed with underactive thyroid borerline. Way back in 2020 I knew nothing about the thyroid, it has been a learning curve since then. I am taking B12 liquid and B complex and my level on my last blood test was 798 (211-911) so slowly going up. I did stop taking the liquid when my level reached over 800 but then it started dropping again so back on to it. I understand that we can't overdose on B12, we just have very expensive pee.
I' m also taking Three Arrows Iron tabs. My feritin was below 30, its now 41 so that is improving also.
There has been no remarks made about my low B12, low feritin, 0% MCV and three other blood results at the very lowest levels. I have lost interest in pursuing this, I now take what supplements I think will help.
We do have to advocate for ourselves. I'm also thinking about trying NDT. In January I am hoping to go back to Kenya for three months or longer. I can get Levothyroxine there over the counter. The doctor who attended me when I took ill in 2019 is helping me. She also has discovered that she has a thyroid problem and may need a thyroidectomy. When she attended me although she didn't pick up on the thyroid she did pick up on the low blood report and gave me liquid iron and several other meds for the various symptoms I had, she was lovely, so attentive and concerned. They may not have all the modern technology but they haven't forgotten how to be empathetic. During the week I was ill before coming back to the UK she did three blood tests and visited me four times. There are no doctors surgeries there, just a little local hospital but the doctors visit you at home, just as well because I couldn't walk at that stage, and because the lab is in the same village the blood test comes back within the hour, . She took me back to the days when we had the 'family doctor', our local doctor was Dr Allan, he delivered my brother in the bedroom at home, and is called Allan after the doctor. I just think that I will feel so much better in the warm sun, swimming every day and all that fresh tropical fruit and fish, no upf rubbish. When I got back home and visited my own GP she labelled me as suffering from post viral fatigue and sent me to the hospital to have tests done to see if I had caught a virus in Kenya, all the tests came back negative, the clinic was called a Rapid Access Clinic ,the next time I had a consultation (Covid had kicked in by then) over the phone I realised that the consultant was a geriatrician, I queried this with my GP and she said that they are the only consultants that can do a full body assessment. By the third consultation I was suspicious that my illness was going to be labelled as age related so I declined to have any more consultations. You don't get old overnight, I was about to swim a mile in the pool before coming back to the UK.
that blood test was done in 22.11.19 when I was first diagnosed with underactive thyroid
OK, so you're thinking that your TSH should have been higher on that test and that's why you suspect a pituitary problem, is that right? Well, given that you have Hashi's, I don't really think these results show a pituitary problem. With Hashi's, Free levels can jump around and the TSH can take a long time to catch up. Besides, the pituitary problem results I've seen, the TSH is a lot lower than that. I cannot imagine that an endo would take this at all seriously, even if he did know what a pituitary problem is.
Besides, even if it is a pituitary problem, there's nothing more that can be done for your thyroid. The only treatment is thyroid hormone replacement, which you're already on. So, I think you're barking up the wrong tree, there.
Have you ever had your cortisol tested? If not, I would suggest that that should be your next step.
Good that you're dealing with your low B12. No, you can't over-dose on it because it is water-soluble.
I' m also taking Three Arrows Iron tabs. My feritin was below 30, its now 41 so that is improving also.
I'm told that the best way to raise ferritin is to eat liver once a week - or liver paté, or black pudding.
There has been no remarks made about my low B12, low feritin, 0% MCV and three other blood results at the very lowest levels.
No, because doctors know absolutely nothing about nutrients. They just don't learn about them in med school.
They may not have all the modern technology but they haven't forgotten how to be empathetic.
That's possibly because they don't have all the modern technology! Technology tends to cause doctors to forget they're dealing with human beings, and treat us all like machines.
I just think that I will feel so much better in the warm sun, swimming every day and all that fresh tropical fruit and fish, no upf rubbish.
You're probably right! Let us know how you get on.
Hi Greygoose, I included the first blood test because you requested it. The latest blood test the GP is anxious about has a TSH of 0.19 (0.35-5.5) I don't know anything about the pituitary but am learning just in case the GP suggests going down that rabbit hole so that I have some ammunition. I also think it is unlikely to be a pituitary issue, my TSH was above 10 at one point. The only info I have read so far seemed very helpful it ended with 'Thyroid hormones are easy to measure and easy to replace, but we may all need to be more generous in what we consider to be really “normal” if we want to achieve optimal thyroid levels in all pituitary patients'.
Had cortisol tested May last year 583 no other reference so I have no idea what that means? It was a one off blood test.
Yes, I've been trying to eat liver pate (don't like red meat-problem)
You're so right about the modern technology. But I'm really grateful for it in the case of my son who is on a trial of immunotherapy for his cancer and it seems to be working. Thank you for all your help
OK, yes, well, I asked about the first blood test results because that's where you would have seen if it was a pituitary problem. I don't think it is. I think it's just good old Hashi's! But your doctor doesn't seem to know anything about it. Why would he suspect a pituitary problem? Does he even know what a pituitary is? 🤣 And your cortisol result doesn't suggest there's anything wrong with the pituitary. It would probably be low if there were a problem.
Believe me, I'm not knocking modern technology. Just the way it affects doctor/patient relations. Sorry to hear about your son. Hope the immunotherapy does work for him. x
" In those with established overt hypothyroidism, levothyroxine doses should be
optimised aiming for a TSH in the 0.3–2.0 mU/L range for 3 to 6 months before a
therapeutic response can be assessed. In some patients, it may be acceptable to have
serum TSH below reference range (e.g. 0.1–0.3 mU/L) but not fully suppressed in
the long term."
Regarding treatment with Levothyroxine it also says:
"If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L."
I suspect "the other issues" will turn out to be questions on how often you take your pills and how many you take. When the GPs come up against something they dont understand, patient compliance are their first thoughts, so be ready for this. The next questions will be to see if you are depressed. We have all been through this, so dont be fazed. Hope it all goes well, and can I come to a nice warm beach in Kenya with you? Its been a while since I was there....
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