I am looking for some recommendations and advice if possible please.
So I started taking t3 alongside t4 in February (after some help from this forum) building the dose up slowly to 20mg a day alongside 100mg of Levo. I had a bad skin reaction mainly on my face and neck after about four weeks. I had felt mildly itchy all over for a bit before the reaction. Really disappointed as felt so much better taking the t3 than I have in a long time. I had very itchy red spots, like a stabbing hot nerve pain and wanted to rip the skin off my face. I took the t3 back down to 10mg a day split into two 5mg doses about four weeks ago and it subsided after about a week but is still there just not as bigger reaction now. It is still uncomfortable at times and I don’t feel as good on the lower does, general aches and pains for example are returning, not sleeping as well, more tired etc.
I am under nuclear medicine for my treatment (after a thyroidectomy and rai in 2019) and discussed this with the consultant when I saw him last week. He is lovely but is not a thyroid specialist and not much expertise in this area. He has agreed to try let me try a different brand of t3 (after me insisting as I can’t carry on with this reaction or the thought of going back onto t4 only) he didn’t know if there were different brands but I assured him there are. I also raised about the liquid form of t3 and enquired about armour/ndt. He said he doesn’t have experience prescribing/administering liquid t3 so did not want to do that. He said there have been a few patients who have gone private on armour and do very well on that but did not give me any guidance as to how to do this.
They have said they will refer me to see an endocrinologist if I want as I have never seen one. I think this might be a good option as they hopefully will have more knowledge and experience in this area but I am aware not all endocrinologists are nessarily good ones, hence this post.
Firstly how does is work when you are on armour/ndt? Does it have to be a private endocrinologist who gives you a prescription? Or do some nhs endocrinologists prescribe it?
Secondly I know everybody is very different but what is an approximate cost per month for ndt just for guidance?
Thirdly I am in Merseyside but do not mind travelling a bit to see a good endocrinologist, I would really appreciate if anybody could private message me any good recommendations please?
I will also email to request the list of private endocrinologists from this group.
My latest bloods from last week are:
Free t4 21.1 (11.5-22.7) down from 23 in January
Free t3 4.8 (3.1-7) up from 3.8 in January
TSH 0.1 (0.30-5.50) down from 0.25 in January
B12 698 (223-1132) up from 423 in January
Vit D 80 (50-125) up from 52 in January
Folate 10.6 (3.9-20) up from 9.9 in January
Ferritin 63 (6-81) down from 67 in January
So all looking better really, t3 could do with being higher in range and I did feel better on 15 and even 20mg a day but can’t tolerate this because of the skin reaction I have. When this blood test was done I had been on the lower dose of 10mg a day of t3 for about four weeks with the same 100 of Levo. I have noticed a few other posts when people have said they have had similar reactions to t3.
In my first post earlier this year I said about three miscarriages I had a couple of years ago before beings diagnosed and treated we were allowed to try again towards the end of last year and had been advised about medication from a fertility side of things too, this was part of the reason to trial t3 so I could feel better and hopefully conceive. Whether it was a coincidence or not I found out I was pregnant a couple of weeks ago but have since had another miscarriage, whilst it is heartbreaking it is motivating me even more find a good endocrinologist with experience and find a form of t3 or ndt that works for me so I can continue to feel better and hopefullly conceive again. I just don’t feel I am getting the right sort of help and am wasting precious time.
I want to thank you in advance for reading another long post and for any help you can offer, if it hadn’t been for this forum I wouldn’t have even tried the t3 and known about the vitamins etc.
Kind regards and well wishes
Written by
rosegold-rockchick
To view profiles and participate in discussions please or .
I am currently taking the igennus super b complex, I have about a month left of the Jarrow formula b-12 and the better you vitamin d+k2 oral spray. The fertility consultant also mentioned about taking a vitamin e supplement so I will look into that.
No I am not on a gluten free or dairy free diet, never have been as not thought I have had a problem with either. I have had tests last year to see if I was intolerant to either and I wasn't. I just felt rubbish on t4 only, probably because I don't convert well at all and then had this reaction on t3.
Levothyroxine at the moment is Mercury pharma, I have been given mostly teva in the past. My next prescription is due in about 5 days time. The brand of t3 I was taking was Mercury Pharma 20mg tablets that I split. The new brand I have been given is Sigma pharma but 5mg tablets. I stopped taking t3 after my blood tests last week so Friday to see if the rash goes away completely, I was going to start the new brand of t3 maybe towards the end of next this week/beginning of next week.
This subject is vast conferring between histamine & mast cells. I don’t think you need an endo but an immunologist. And I don’t think you should discontinue T3 or change T3 meds because it possibly isn’t the fillers but an unfortunate side effect of the T3 itself.
There isn’t a lot of research into mast cells and most of it is to do with modulating immunity issues but in between the rodent research it has been proven that mast cells synthesise and secrete histamine, but also store T3 and there is thought that due to T3’s rapidity of onset it may trigger histamine release. (Csaba and Pállinger, 2009a,b; Thangam et al., 2018)
Histamine acts as a neurotransmitter regulating sleep, stomach acid and being released when we needs water, salt or potassium. There are four types of histamine receptor cells (H1R, H2R, H3R, and H4R) & each influences different systems of the body. However, when too much is released it is known as ‘histamine intolerance’ as is unable to be broken down within the body resulting in itching, hives, sneezing, post nasal drip, etc.
Histamine intolerance is not recognised by the medical profession (much like adrenal fatigue) but is common in people with low thyroid hormone and more so in people with Hashi, although I presume you don’t have Hashi because you’ve had a thyroidectomy. But all elevated inflammation (whether thyroid antibodies or histamine) can have a profound effect on thyroid metabolism and physiology. If you want to investigate further then look to genetics, the methylation cycle and the enzyme DAO (diamine oxidase). It’s fascinating and you may be able to discourage your itching just with a change of diet and/or supplements.
Thank you for your reply. I have seen a similar suggestion on somebody else’s post about the mast cells and histamine response.
It’s just strange as it is not like hives on my face, more like an acne breakout that is itchy and hot at the same time.
It’s taken me nearly six months to get them to let me try t3 and I just feel like I don’t know where to even start in trying to research more things.
I did try taking anti-histamines when it was bad but didn’t feel like they did much to help. With trying to conceive as well I try to make sure I don’t take anything detrimental.
I have never been told I have hashi’s no and my thyroglobulin antibodies in ,y blood tests last week were less than 0.1 as they have been since my operation.
A strange thing is though my sneezing, post nasal drip, stomach acid symptoms all got much better taking t3 it was literally just this rash/ breakout reaction that I can’t deal with.
Would it be worth trying ndt you think?
I will do a bit of reading around what you suggested too.
I don't think switching to NDT will help if it is the T3 causing the release of elevated histamine. There is a test by the way that measures histamine release. If you wanted details I could look it out as can't remember off the top of my head.
Maybe splitting T3 dose into three times a day for a while in addition to above suggestions may help. Also acne can be the result of hormonal changes. Has PCOS been considered?
I did take 15mg split into three doses for a while but didn’t really notice much difference, maybe would have to try that for longer.
That would be great if you could look up about he test that measures histamine release please, thank you so much.
There’s has been no mention of PCOS and I have had various blood tests and an ultrasound scan so think it would have been picked up by that.
I haven’t rwllly suffered with bad skin for years and years, once when I was on the contraceptive pill they changed the brand without telling me and that caused a breakout, as soon as I got changed back things settled so that’s why I thought it may just be worth trying another brand whilst I have that option.
Sorry, I can’t find the exact test I had but it measured serum diamine oxidase activity, through which histamine metabolism & degradation could be evaluated.
It was done at The Doctors Laboratory in London (although can’t see it on their list now) and carried out because I felt a bit itchy after starting T3 in 2016 (although didn’t suffer the acne you describe), and histamine being involved in inflammatory response stuff is a huge mediator of itching.
Anyway, my own results showed adequate levels of DAO although I still find processed foods, chinese takeaways & wine can make me wake sneezing during the night because these foods also contain high levels of histamine, as well as the histamine response made as a result from any allergies. This makes me think my levels probably continue to be borderline although I don't suffer the itching any more.
Addressing gut issues helped enormously because when food isn’t digested properly it causes histamine overproduction and the correct amount of histamine plays a major role in the regulation of gastric acid secretion. Remember the right amount is vital to all our well being.
Similar to lactose intolerance (deficiency in the enzyme lactase), there are supplements you can buy containing the enzyme that breaks down histamine in the digestive tract. I haven’t tried them as just try to avoid my triggers (switched to gin 😁), low histamine foods and supplement curcumin, fish oils, Vit D, Vit C, etc any sups that calms/modulates the immune system. Also used to supplement Kaprex A1 (containing HOPS).
Thank you for looking and the information. I will read up on it all and hopefully find a solution or some way of taking t3 without th Dre action at some point 🤞🏻
Hi Rosegold, I am so sorry to hear about your miscarriages, that must have been tough. I think the histamine lead is the most likely, however I think, from what I have read myself, it is a symptom as opposed to an actual reason/cause. Have you looked at hormone levels for progesterone for example? I take a supplement called pregnenolone which is supposed to be a precursor for the body to make sex hormones. I take it for adrenal support, according to my research, but I noticed one of its so called qualities is that it reduces allergic reaction. I also take Ashwagandha which was recommended to me by a private GP, it is suppose to calm down the mast cell receptors. As a result I do feel less itchy and sneezy. I wouldn’t dare suggest you take these or any supplements yourself without proper guidance but it could be a question to ask a doctor. I saw a private gp as opposed to a private endocrinologist, just because I thought it might be cheaper? And they were able to give me a prescription for ndt. Antihistamines are not recommended for so called histamine intolerance but to be fair the subject has not been researched to a great extent so there is very limited and conflicting advice available. You are entitled to choose which endocrinologist you would like to see on the nhs so choose from a site that has reviews of drs. I wish you well, and don’t underestimate the importance of being kind to yourself especially after your loss. x
So sorry I have only just seen your response. Thank you so much for taking the time to reply and I will consider what you have said. When choosing a private gp did you just look around for one or follow a recommendation please? Thank you, kind regards
Hi rosegold-rockchick! I chose the private gp from the thyroid uk private doctors list and because she was only about 5 miles away from me! There is a website with reviews of nhs endocrinologist on line and if near to you you can ask to be referred, I think it’s called ‘findmeadoctor’ oh dear not actually sure about what it’s called, if I do remember I’ll let you know. Lovely to hear from you, best of luck x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Buying T3 and seeing an Endocrinologist in Europe
Endocrinologist referral advice.
An Endocrinologist who doesn’t believe in T3 helping
Starting T3 tomorrow. Advice?
