So after advice from here, I got private bloods done (medi check) to check my T3 and for antibodies as GP wouldn’t do these. Apparently my TSH levels are all normal range but my antibodies are high and abnormal ( see below). I had just switched to gluten free / low gluten before these results came back so l will continue with that now. I’ll make an appointment with GP but any advice on where I go from here? I am assuming I’ll get a poor / frustrating response from the GP.
I’m 50 and have been on 125 Levo for maybe 15 years. I’ve put on nearly 2 stone in the last couple of years despite watching diet and taking exercise- maybe the extra weight might be an argument for increasing my Levo?
I’m read on this site about people being poor converters - do my blood results suggest that might be an issue with me? I get the impression that GPs don’t really understand or treat this, so if that is the case with me, any advice on what to do?
My neck is uncomfortable / tender but it seems to be around the Lymph gland area and not the thyroid which is strange.
My medi check results are (taken first thing in morning and no levo for 24 hours):
TSH 1.33 mIU/L. Range 0.27 - 4.2
FREE T3 3.87 pmol/L. Range 3.1 - 6.8
FREE THYROXINE 19 range 12 - 22
THYROGLOBULIN ANTIBODIES
571. kIU/L. < 115 R
THYROID PEROXIDASE ANTIBODIES
>600. kIU/L. < 34 R
I had vitamins checked by doctor, which I had posted previously :
Serum iron 25 (6-36) umol/L
Transferrin 2.45 (2.0 - 3.6) g/l
Ferritin 30. (Ug/L no range given)
Transferrin saturation 41% no range given
Vit D 74. (nmol/L no range given)
B12. 273. (197-771) ng/L
Foliate 4.4. >3.9. ug/L
This all seems very complicated, so I really appreciate having this site to read and ask questions.
Thanks
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Trisha15
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Those results show poor conversion. FT4 is 70% through range and FT3 is only 20.81% through range.
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For good conversion to take place all nutrient levels need to be optimal. I gave some suggestions in reply to your previous post about your levels. Hopefully you are now taking enough D3 along with it's important co-factors magnesium and Vit K2-MK7. If so then that will improve your Vit D level and you should eventually reach the recommended level which you'll then need to maintain, as explained.
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As for B12 - did you check for signs of deficiency? Do you have any? And Folate can't be dealt with until B12 has been looked into, as explained. So what's the situation there?
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Are you addressing the low ferritin with iron rich foods as suggested, iron tablets wont be the right course of action as you don't have iron deficiency, as explained.
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Your raised antibodies suggest Hashi's. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
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Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
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Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
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You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
To be honest I am still getting my head around all this. There is a lot to take in, in terms of finding or getting to that optimal level. There was never any mention of the impact of my thyroid on vitamins before nor had I heard of Hashi until I started googling thyroid quite recently.
I will see what the GP says in terms of this, although as they never phoned with an update on the blood results they took, I am assuming that they think my vitamin levels are grand.
I was talking vitamin D intermittently and mostly during the winter so I will start that on a more consistent basis now. I did look at the vitamin B12 deficiency signs and some where there and others were not. But as a lot of the symptoms of it, thyroid and menopause are similar, it’s hard to make a judgement. I suppose I’m just on the start of this journey to understand my health and diet and how it all works together. I have started recording my food on a fitness app, so hopefully that will help make things clearer to me. I’ve a lot more reading and note taking to do!
There was never any mention of the impact of my thyroid on vitamins before .... I will see what the GP says in terms of this, although as they never phoned with an update on the blood results they took, I am assuming that they think my vitamin levels are grand.
The problem is that doctors just don't know about this. They are not taught nutrition at med school so as far as they are concerned if the result is anywhere within range then that is fine. But some ranges are far too wide. Look at the range for B12 - 197-771. There is no way that someone with a level of 197 is going to feel the same as someone with a level of 771 but to a doctor both will be classed as normal. Many people with a B12 level in the 300s have been found to need B12 injections, so as far as B12 is concerned it's not numbers that matter, it's symptoms.
Same with Ferritin. My surgery's range is 15-300 and again a doctor will say you're fine if you have a level of 15 or 300, but no way would either be good. From nahypothyroidism.org/deiodi...
Iron deficiency
Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present.
However, a ferritin level below 70 does not confirm iron deficiency. I have quoted that to show that conversion of T4 to T3 will likely be impaired if ferritin is below 70, but doctors don't seem to know that.
According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
again, doctors don't know this.
I have read in one article that females who brought their ferritin level above 100 saw their persistent hypothyroid symptoms relieved, and another article suggests that a level of 100-130 is good for females
I’m going to start taking notes and making sense of all this before I ask / phone the doctors. I want to be able to ask them and point things out by need to get it straight in my head first.
ButI’m assuming I will get little help from this route. So is it a case of reading up then self medicating in terms of supplements and diet and hope this has the desired effect?
Tbh I was slightly worried that the GP might suggest I need anti depressants so I’m more than happy to see if these other adjustments can get me on a more level playing field. And hopefully the other symptoms will lessen too.
I’m know there’s no magic wand, but at least I am in a more informed place now.
FYI - when I was first diagnosed with hypo, my doctor told me that if you had to pick a chronic disease to have then this would be it. He made it seem quite trivial. I think it sums up why they are so dismissive of all things thyroid!
ButI’m assuming I will get little help from this route. So is it a case of reading up then self medicating in terms of supplements and diet and hope this has the desired effect?
That's right. So many, many hypo patients have poor nutrient levels, especially when Hashi's is present, you'd think that doctors would make the connection, but they don't routinely test for them anyway.
FYI - when I was first diagnosed with hypo, my doctor told me that if you had to pick a chronic disease to have then this would be it. He made it seem quite trivial. I think it sums up why they are so dismissive of all things thyroid!
That's typical of how they see hypothyroidism, it's such a simple condition, this little pill taken once a day will make everything go away and all will be perfect again. If only. It's this sort of remark that makes me wish that every doctor develops hypothyroidism, doesn't respond well to treatment but their symptoms are ignored by their own GP and they're left to suffer like we are. The only doctors who understand hypothyroidism are the ones who have the condition themselves and have struggled to achieve wellness.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
A GP will only call Hashimoto’s autoimmune thyroid disease...and as they have no specific treatment for the autoimmune aspect they completely ignore it and don’t consider it relevant
They only treat the subsequent hypothyroidism...usually just with levothyroxine
But many Hashimoto’s patients are poor converters and need addition of small dose of T3 alongside levothyroxine
Because NHS is being charged ludicrous amount from limited suppliers of T3...its now extremely difficult (but not impossible) to get T3 prescribed on NHS
But first...before considering T3 all four vitamins need to be optimal
Hypothyroidism leads to low stomach acid and this results in low vitamins....not a connection many GP’s are aware off at all
Ask GP for full testing for Pernicious Anaemia before starting any B vitamins
Good that you are on strictly gluten free diet. Have you noticed any improvements yet?
Email Dionne at Thyroid UK for lists of thyroid specialist endocrinologists who will prescribe T3
I’ve literally just started the low gluten from Monday so too early to tell. And I don’t think I would describe it as gluten free just yet - I didn’t realise so many foods had hidden gluten.
This is a big learning curve!!
I felt better when I was first put on levo probably around 16 years ago, but then my symptoms were much more severe back then. This has been slowly building for a number of years and every time I went to the doctor I was told bloods all normal. No other information or feedback from the doctor. It’s been a slow boil getting to this point, but I do wonder if my GP, or if I had been more clued in, then I could have managed this a lot better.
Thanks to both of you for the input. I feel a lot more in control of things now ( not sure control is the right word) but this is the first time i have felt like that in years. At least I can try things that might help rather than be made to feel it’s all in my head.
I think it’s common for conversion to get worse the longer we are on levothyroxine
Vitamin levels drop when not perfectly treated and as vitamins drop...TSH tends to drop....and that’s all medics tend to look at
Getting all four vitamins optimal by supplementing can help improve conversion ....but frequently we still need either high dose levothyroxine or addition of small dose of T3 alongside levothyroxine
Strictly gluten free diet does need to be absolutely strictly gluten free to be effective. If toasting gluten free bread either get a roasting bag from coeliac unto use in normal toaster...or have a separate GF one. Separate butter, jam, etc
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I had my bloods done as suggested
Updated blood results
High T4 - Test Results
New blood test results
Mixed blood test results - what's the next step?
