I have been on Levo 50mcg for 20 months & T3 40mcg split into three doses for 14 months. In July 2020 I started to get swelling in my feet, ankle & leg but only in the left leg. It then went to my right leg & foot too. This went on until the end of November 2020. I was then put on water tablets to help with the edema. I then developed a severe rash on my legs from the knees down & the swelling got worse. I saw a dermatologist & was told to stop the water tablet. The rash then went to the tops of my legs, stomach, arms & back. This all lasted about 10 weeks & then it all cleared up & the edema went. Then for nearly three months I had no problems. Then 2 months ago I developed the rash on my legs again & the edema in my legs & feet. I had a skin biopsy done & the result has come back as a severe drug reaction that normally only seen in people who have had chemotherapy which I have not. So they can’t tell me which drug I’m taking is the culprit so I’ve been put on a 5 week course of steroids. The medication I’m taking other than the thyroid meds are:
Motillium
Folic acid
Imodium
Ramipril
B12 injections
Vit D spray
The dermatologist is blaming my thyroid meds as they are the newest of all my drugs. I’m not convinced he is right. Has anyone had this reaction to either Levothyroxine or Liothyrinine? I have felt so much better health wise since adding T3. My cholesterol has dropped from 6 - 4.3 & my blood sugars are now normal. Surely if it was my thyroid meds then it would of given me the rash from the beginning. I’m just so confused as I don’t know who to believe.
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Redporti
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Sorry to say, you really need to check every packet of everything. Makes, dosages, excipients (inactive ingredients) - even batch numbers and expiry dates.
(Just do the best you can - as it is obviously likely you don't have every single bit of paper and packaging.)
Ok so I need to do a chart with all the fillers etc & see what ones are in what. But how will I know what filler etc it is that is causing the drug reaction. Will I have to stop all my meds one at a time as see if the rash goes? Most of them I can’t stop as I will be more ill than I am now.
You won't know to begin with. Maybe you will need to stop them as you say - but obviously if they are essential, maybe simply change make? Possibly we could find two makes one one medicine which have no excipients in common!
But we don't yet know what you take when! For example, do you have B12 injections every 12 weeks? Every week? Every day?
And some excipients are well-known as triggers of reactions. One being acacia - which for many of us is no problem, but for others can cause unpleasant symptoms.
Ok I see what you mean. I have B12 injections once a week for the past 4 years. The rest of my medication is daily.
I guess it might not necessarily be one drug that is the culprit, it could be two or three of the drugs I’m taking. I can see that I am on very long journey trying to work this out.
I wonder if there is a simpler way of doing skin patch tests with the different drugs I am taking to see if any of them cause a skin reaction.
I can’t be the first person who this has happened to so surely there has to be someone who can help me in the medical field. I’m just feeling so frustrated as I don’t like the thought of what the steroids are doing to my body.
Note the date when the rash first appeared then look at the meds and the dates when they were added in. That would be my starting point.
If the thyroid meds were the last ones added in and its since then that the rash started to appear it could well be one of the fillers in the thyroid meds. Each brand of thyroid treatment will have different fillers. It could be the rash disappeared because the brand of one fo the meds was changed as it depends what pharmacies have in stock to what they provide -has the same active ingredients though.
I had a terrible rash that was caused by a filler in one of the tablets I take.....changing brands to make sure its not in that tablet sorted it out and Ive not had the rash since .......been several years. My GP simply writes the specific brand that I can tolerate on the script so Pharmacy doesnt switch the brand. Bit lazy of dermatology not to test you for sensitivities!! The list of contents including the fillers should be on the instruction sheet.
The swelling started 5 months before the rash. I have been on Accord for over 2 years as Teva made me feel sick. Also been on Thybon T3 since I started it. Rash was 8 months after starting that.
Intolerances can happen to the fillers in meds but there is as much chance of your issues resulting from histamine intolerance (elevated histamine levels due to impaired excretion abilities caused by previous & present inadequate thyroid hormone levels) rather than a direct result of the meds themselves.
TFT’s are only representative of what is in our blood and not working on a cellular level. When we have low thyroid hormone (or thyroid meds not working well) the body slows in all functions which includes utilisation and excretion of what we don’t need. This puts the body in a vulnerable state, with less window of tolerance and more likelihood of unwanted reactions such as seasonal allergies, long term post nasal drip or spontaneous hives, headaches, etc.
You previously advised of an ‘itchy rash with hives’ reaction to Furosemide in another forum. Although your thyroid meds are addressing issues on some level evidenced by improved cholesterol, blood sugar levels, edema is a classic symptom of inadequate thyroid hormone.
Have you considered your T4:T3 ratio to be too T3 heavy? (ie insufficient T4, too much T3). Some people function better on T3-only but for the remainder of us, the enzymes that control how our thyroid meds perform on a cellular level are dictated by this T4:T3 ratio.
When a person who requires a T4/T3 combo for best function medicates T3-only, it stands to reason T3 will be elevated above those levels required for best function, and so brings with it the associated risks of driving up SHBG, TBG, oestrogen, etc. which can prevent further meds from working well as too much thyroid hormone becomes bound.
With edema being a big issue here, I would be asking myself why I have become so intolerant of things , ie finding the root cause as opposed to directing attention to the resulting intolerances.
Yes I’m getting my full thyroid blood results on Tuesday so will know FT3 too.
I thought that when you start adding T3 to T4 the T4 levels often drop. I have been on 50mcg of Levo for a year now & my levels were in range. As I’ve increased the T3 my T4 levels have now dropped. Is that what should happen?
Hi RedportiI don't know if this will help but my mum recently had a rash all over her body , some parts looked like they might blister.
We wracked our brains trying to work out what it might be because she's hardly set foot out of the house for 18months, she hasn't bought/worn any new clothes or changed her washing powder.
Eventually we thought we had solved it when we discovered that she had been given a pack of TEVA levothyroxine. The rash started soon after she started taking the pack and it has almost gone now she is on a different brand.
I have reported this as an adverse reaction , via the yellow card scheme, on her behalf as she does not have an internet connection.
I have also asked that the pharmacy do not dispense this make again.
I hope you can pinpoint what might have caused your reaction, but as others have said, check all your medications and see if you have been given a different make to that which you usually take.
I don’t know if this will help but I tried Thybon Henning T3, well, I took half a tablet (10 mcg) once, before bed and woke twice in the night with agonising cramp in my right calf. The following day, by lunchtime, my feet and ankles were swollen like balloons. That was my first and last trial of Thybon. If it as me, I would try a different brand of T3. Also, I believe Ramipril can cause problems for your kidneys and can also elevate potassium.Good luck in finding an answer.
Thank you. Obviously that is something to look into. I was on Thybon for 3 months before I started to get the swelling. It was then 8 months before I got the rash.
The T3 has really helped me with other things so I’m very reluctant to stop it.
I think this has to be tackled methodically because if I change to many things in one go I’m not going to know what one it is that has helped. I’m on steroids for 5 weeks now & need to see if the help to calm things down. Then I need to be off them to see if it all comes back. Then would be the time to start changing my medication one tablet at a time.
I’m not suggesting you stop your T3 but to just try another brand. I believe Thybon is a different type of Liothyronine than others. I’m sure someone more knowledgeable will help with that. SlowDragon SeasideSusie
ACE inhibitors can be fine for years and then a person can develop a severeallergic reaction to it suddenly. Your doctors are not on the ball. Your next
reaction can be anaphylaxis. This drug needs to be stopped.
Thank you for your reply. I have been on Motillium for 18 years & always the same brand. I have also been on Imodium for 18 years & lots of different brands. I have been on Ramipril for 6 years & different brands too.
I only take ramipril because I have stage 3 chronic kidney disease & the nephrologist said it would help to protect my heart & kidneys. I have never had high blood pressure.
I was also diagnosed with Heart Failure with Preserved Ejection Fraction in October 2020 when I was being investigated for the swelling in my legs & breathlessness.
Cardiologist doesn’t think it’s the cause of my rash or edema. My inflammation markers in my blood have been a little high for over 2 years now & that’s why they think it’s a inflammatory problem.
CONCLUSION: In patients with solitary kidney, low FT3 level is associated with the progression of CKD. In addition, development of hyperkalemia is common in CKD patients with low FT3 levels.
I had 110cm of small intestine removed 21 years ago due to a twisted intestine. Therefore I now have bile salt malabsorption, gastroparesis & small bowel syndrome. That’s why I have to inject b12 as I lost most of my terminal illieum. That’s also why I take Imodium & Motillium.
I have had a coeliac blood test & it was negative. I have been taking the steroids now for 4 days & this is the first day for months where I haven’t had to rush to the toilet first thing. Maybe that’s because they have taken out the inflammation in my bowel which was causing the diarrhoea.
I have tried the fodmap diet and mainly eat just chicken & rice. Fruit, veg, onions, garlic just fall out of me.
You could try an Angiotensin receptor blocker instead of an ACE inhibitor.Instead of taking a 'pril' drug move to a 'sartan' drug. It has the same effect in sparing the
That's the very weird thing about ACE inhibitors: Patients take the same drug for years
without complications and then all of a sudden: BOOM! Bad reaction. I'm surprised your doctors have not at least considered Ramipril as being the culprit. Adverse reactions years
That's how reactions go. You don't get a huge response as soon as you take the pill.You need to learn more about adverse drug reactions to ACE inhibitors.
I had systemic allergic to an ingredient in Generic Levothyroxine Sodium by Lannett company. It took a while to occur (more than a month). I'm not sure which ingredient caused it. Inactive Ingredients: MAGNESIUM STEARATE, NF (UNII: 70097M6I30) MICROCRYSTALLINE CELLULOSE, NF (UNII: OP1R32D61U) COLLOIDAL SILICON DIOXIDE (UNII: ETJ7Z6XBU4), SODIUM STARCH GLYCOLATE TYPE A POTATO (UNII: 5856J3G2A2). Maybe the silicon dioxide? Nasty stuff. Bad for the GI tract and likely to cause endotoxin.
Rash, hives, itching over my entire body. It stopped within a couple of days after discontinuation. That's my only Rx aside from some safe supplements. You'll have to log things and figure it out by process of elimination. Your diet, endotoxin load, histamine, serotonin, estrogen, stress hormones could all be factors. I read and listen to a lot of Ray Peat's, PhD., stuff.
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