I have had Hashimotos (hypothyroid) since I was 15. I am now 39. My journey has been up and down like many I'm sure. I have tried a combination of T3 and T4 previously. Was getting on well and it was stopped after 7 months due to funding. I'm currently taking 175 mcg. My issue is that TSH is very low (but this is normal for me and is stable) I was very poorly at Christmas (general viruses) for about 6 weeks, and since then have been going down the gradual tiredness spiral. I feel like my internal boiler has gone off and I am continually cold. I also have Reynaud's which is prevelant at the moment most of the time (amlodipine 5mg daily taken and I am under neurology). My endo will not increase my T4 as my TSH is so low but would be happy to supervise T3 and T4 levels if I can source it. I do not know where to start and I am hoping someone may be able to message me and point me in the right direction please, as I am worried about buying fakes. These are my latest bloods.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
As you have Hashimoto’s are you on strictly gluten free diet or tried it?
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 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 over 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
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.
Hi. Wow thank you what an awesome lot of information. I have been gluten free in the past for about 5 years and felt slightly better but no massively. I have been dairy free since October last year and that made a big difference. I have been slowly having more gluten recently so perhaps I should start with that. As my vitamin bloods were done privately I was not offered any supplements or loading doses so have just been doing what I can myself. From the looks of it i may need quite a bit more.
My ferratin levels were ;
Ferritin 34.5
13 - 150 ug/L
Transferrin Saturation 39.7
20 - 50 %
B12-Active 61.8
>37.5 pmol/L
I am so so grateful for your help. I feel like I'm going crazy but I know I'm not. I really do want to retry T3 again soon, so any suggestions would be massively appreciated. It was the only time my Reynaud's was not an issue when i took the combination T3 and T4.
Iron and ferritin are complex. You shouldn’t supplement iron unless has full iron panel test to see if iron is also low
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
5.8 - 34.5 umol/L Apologies I didn't think you would need iron levels. Didn't think about these as it seemed ok ish? You guys are really kind helping people like us who have no clue. Thank you
As you are dairy/lactose intolerant are you on lactose free Levothyroxine?
Tablets or liquid?
Tablets - the two UK lactose free tablets are Teva and Aristo (Aristo only recently licensed)
Many dairy intolerant Hashimoto’s patients do better on liquid levothyroxine. Has endo ever tried this ?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. But Teva is a Marmite brand....some people love it ....often if lactose intolerant
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
The issue I have is my endo is in a different county. I am in Cornwall, he is in Somerset. When he first prescribed the T3 a few years ago, he asked my Gp to prescribe it. They did very reluctantly but then decided after 7 months that it could not continue due to cost and the fact it was only a small dose. I was only on 10mcg with 150 levo thyroxine but it worked for me. I guess I should have made more of a fuss at the time, but they gave me 200mcg thyroxine and i felt ok after the initial stopping of T3. However my tsh has been an issue for literally years. It never really goes above 0.014 , but my T4 has been consistently lowering over the years (but of course still well in range)I am now on 175 mcg and symptoms returning after 2 years on this dose. I am not a confirmed dairy intolerant but my daughter also had massive issues with dairy, so we both came off it together and it made us both feel better. I cannot face having an endoscopy so I have never persued the Celiac route. I just decided to try going gluten free as my brother has major issues with it.
Yes it all comes down to cost. He will monitor me if i source the T3 but will not force the fact with my Gp as it's another county, hence me wondering if anyone sourced abroad with private presciption. I'm losing my fight in me at the minute, which I'm sure most people on here can relate to at some point.
Oh sorry yes and I take almus (boots own brand) which is actavis as this work for me. Same every month as my pharmacy are very good. I really did not get on with Teva, big style!
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Looking for some insight 
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