Is hypothyroidism to blame for it? Going to the doc's tomorrow to see about it, and my latest thyroid test. Depressingly, the test results are right back up to what I suspect they have been throughout the past six months (I had a fluke low test result), almost to the decimal point (very first test 5.2 / 10. Today's test 5.1 / 10), so I'm going to screw my courage to the sticking point and ask for a trial of thyroid meds.
I'm a bit late asking this, but hopefully someone might see this tonight - should I get a test run of about 3 - 4 months medication? I'm sure I read it takes that long to see results. He'll probably grudgingly give me a fortnight's worth of treatment, if I get anything at all, so what do I actually need, to give it a fair trial? Might as well fight over that too!
But my pet rash... Because I was going to see him tomorrow, I made the effort to look back through my records to see when I first brought it up, and I've worked out it must have been June/July 2014. Yes, you read that right. I've had a steadily worsening rash for approximately 14 months. One year and two months. My gob is smacked. I can't believe he's ignored a rash I've complained about solidly for over a year, and left it completely untreated (except for the antifungal I requested way back, when I thought it might be ringworm). It's only because I said to him last visit "Will you please, please give me a referral to a dermatologist?". I think that shook him up a bit.
I've looked all over the web, several times now, and while the rash does look like Pityriasis Rosea (his hasty diagnosis), that should only last five months, tops, and that's rarely. But mine's is not only still there, but getting steadily worse.
Anyhow, I wanted to ask, anyone else hypothyroid got a pet rash? How long have you had it, and what is it? Short of a biopsy, I can't think of any other way of diagnosing this. So any suggestions while I'm waiting to see a dermatologist (if the doc lets me!) most gratefully accepted....
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Chancery
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{hugs} I know they've ruled out coeliac though you're not convinced. I am firmly of the belief that coeliac tests give false negatives, but have nothing to point to to back up my view. Do you eat gluten free anyway? I only ask, as there is an associated rash with coeliac that's known as dematitis herpetiform... Maybe worth a Google to see if your rash looks anything like it?
Spot! Like it! Wish I'd thought of it. No, it's usually called "this f&*£$! thing". But no, it's definitely not dermatitis herpetiform; doesn't resemble it at all. So no joy there, Jazz...
P.S. No, I don't eat gluten free. I've had so many coeliac tests, and autoimmune tests, and they all come up blank, that I can't imagine gluten is the culprit here. Not unless it's being more cunning than Sherlock Holmes!
Hi Chancery,
Yes Levothyroxine takes about six weeks to saturate every cell in the body and then your doctor should retest your bloods.
He will probably only give you six weeks worth and then assess and depending on your results, increase or not . Dose increments are always small so the body can tolerate them and he probably won't be guided by how you feel but strictly by your TSH level.
Although I have lots of weird symptoms, a rash is not one so I can't help with that.
Ah, thank you, Flower, you've rescued me. I was cursing myself for not getting off my butt sooner to ask what length a trial should be. Six weeks - right, I'm armed. So will he do another blood test after that, and if the results are no different he puts the Levothyroxine up a little? What happens if they have gone down, I.e. got more normal?
Hi can't believe you still have that demand a referral
Chancery, you need a minimum 3 month trial of Levothyroxine. Some GP's prescribe 28 days and some 56 or more. It takes up to 6 weeks for Levothyroxine to metabolise so I don't think even your GP will prescribe 14 days.
I hope he does something about the rash. My skin used to be oily prior to hypothyroidism and prone to spots. Skin's become very dry since thyroidectomy but no more spots.
Ah, thank you, Clutter. I didn't imagine the 3 month figure, but I should stick my neck out for at least 6 weeks, I see. I'm afraid I have zero faith in him knowing what to give, and I have a horrible feeling he might refuse me anyway. It's odd, when I got the first 5.2/10 result he was all for a trial treatment; it was me who said I didn't want it. I have NO idea why he's changed his mind. I only know he does this a lot. Frustrating, annoying man...
Yeah, the rash is a real conundrum. The other two contenders I have presently are Pityriasis versicolor, which can be caused by excessive sweating and poor immunity, both of which I am afflicted with. I overheat constantly. I can honestly say, embarrassing as it is to admit, that it is one of the worst symptoms I have. Technically, it's not painful or anything, but it makes you feel so harassed all the time, and it breaks your sleep terribly.
The other contender is some kind of eczema caused by overly dry skin (I forget the name of it), but that's why I want to see the dermatologist. It's insane, this throw a dart at it style of diagnosing. Why not just get a bloody skin biopsy and diagnose it properly?
Chancery, you should stick out for a 3 month trial. Symptoms lag so you may not notice much, if any, improvement in 6 weeks.
I don't understand why patients are expected to tolerate debilitating, painful, unpleasant or embarrassing symptoms that are troublesome enough to see a doctor about for months/years before getting a referral to someone who might be able to resolve problems. Perhaps some GPs think there is a health fairy who will sprinkle cure-dust and magic the problem away.
You might remind your doctor that you feel most of your symptoms attribute to an unmanaged thyroid condition and as symptoms lag behind good biochemistry by 6-8 weeks and an initial saturation period takes up to 6 weeks, this equates to a minimum of three months.
Re your gut issues, have you tried Betaine HP, biliary support and digestive enzymes? These have done absolute wonders for my long term tummy problems and aided thyroid med and supplements absorbtion. It is a long road but I already see a difference.
Don't know what kind of luck I'll have with that, Flower. He's made it plain that if my blood test results go back to normal the thyroxine supply will be cut off - bit like a crack cocaine dealer! So everything is riding on the 6 week blood tests. If they're good, my outlook is bad.
No, I've never tried the betaine/enzyme path. Mostly, other than constipation and some gut burning when I eat 'bad' foods (chocolate, fizzy drinks, McDonald's), it does okay these days. I'm reluctant to mess about with it - and it's so expensive to work with all those supplements. Plus, of course, I take so many bloody tablets these days, I'm disinclined to add more. I just added ANOTHER two today, with the thyroxine and antihistamines for the rash.
I am pretty sure I have low stomach acid, Flower, and have had for many years, but I am nervous of messing about with it. One day I will pick up the courage to try Betaine tablets, just not right now! One med at a time...
Hi Clutter. I've been given a 6 week trial period today, along with a warning that it will be judged on thyroid test results and when they go back to normal the meds will disappear correspondingly. I had the lecture about how dangerous being overmedicated is and how some women get 'high' on it. I laughed and said "So you take meds off women when they are feeling better? That's bonkers." It upset him a bit, but hey, kind of needed to be said. But at least I know to expect a fight at the end of the six weeks....
Chancery, Did you ask for Levothyroxine or did you ask him to overmedicate you with Levothyroxine? I think he's confusing Levothyroxine with crack cocaine, can't imagine how anyone gets high on Levothyroxine. I don't think it's on the govt. list of legal highs to be banned either. He's as mad as a box of frogs. Wonder whether he stops his patients warfarin, insulin etc when their levels normalise?
He was just covering his ass, Clutter - against arguments from me. He knows how 'persuasive' I can be, i.e. argumentative and dogged, if I want something. I think he was trying to pre-empt me arguing with him to get treatment I didn't 'need'. But what I said to him still stands, they treat women and make them better, then refuse them the treatment that makes them better because the blood tests say so. There is something seriously screwed up in that.
He's prescribed 50mg a day. I think that's standard?
That's what I thought. But I'm honestly not sure if that's what he intends - I may have got a hold of the wrong end of the stick! Perhaps he was just warning me that I wouldn't get any extras, if I started to feel good - God forbid! On the other hand, he's done and said many weird things - anything's possible....
...profuse sweating ? - your thyroid is your thermostat ! The skin normally reflects what is going on in the gut. It is also our biggest organ and of course will be affected by the thyroid.
I've told him and told him about the overheating, Marz, and all I get is a big fat nothing. I don't know what else to do. I don't know if he thinks I'm a natural exaggerator (i.e. a liar) or he just thinks all women my age sweat too much. It's the menopause, don't you know....
I'd had an annoying rash which moved around my body for about 4 years. It disappeared within about a month of starting levothyroxine.
Doctors had tried everything - anti-fungal, anti bacterial, hydrocortisone etc and they all seemed to make it worse so in the end I just lived with it.
So you never got a diagnosis or a name for it, Bobs? My doc just gave me antihistamine tablets today, but I told him that if they don't work I want to see a dermatologist. He laughed at my belief that a dermatologist would know any better. He's probably right, that's the worst thing!
Oh Bobs, you've got me all excited now. Hope my hopes won't be dashed. Although itching isn't my worst problem. I'd say 'low mood' (what a euphemism!), overheating and insane weight gain, or more accurately the inability to lose it (terrible food cravings) are my worst symptoms - hands down. I'm ignoring the trigeminal neuralgia, of course, which low thyroid could have contributed to, even if it hasn't caused it.
My doc knows zero about the free T4 and free T3 stuff, Faith - all it does is make him cross if you suggest it. And it's not Hashimoto's apparently - zero antibodies (3, I think, actually, as I recall. It's embarrassing!)
If he knows nothing about FT4 and FT3 then he is in NO position to reduce your meds or even stop them based on the TSH. He should be reported for negligence if he does.... Have you read the research paper posted by Diogenes this week ?
Have you been told how to take your T4 ? How much are you taking ? Hope your Ferritin levels are top notch - needed to help with the conversion of the T4 tablet into the ACTIVE hormone T3. Absorption is key - so I would certainly look at Flowers advice about Betaine HCL. Taking care of the basics is key if you want good results ....
No, I haven't seen the paper, Marz. I've been following my doc's advice and staying away from the forums! Can you point me in the right direction, if you have a link?
My ferritin was fine when it was tested (I've never had an iron problem), but no, no advice on how to take the tablet. I've just followed the instructions in the packet - one before breakfast.
They had to jump through hoops to modify this piece in order to be published.
Take your tablet with a good amount of water and do not eat or drink anything containing milk anything for at least an hour. Have a feeling the PIL says half an hour.
How much are you taking ? Glad your Ferritin is around 80/90 - that is good so should help you lot.
Thanks, Marz. I'll go and check that out. It may prove useful when I see him next, especially if my blood tests aren't delivering as they should, or he starts trying to make me a lumpen ball of misery again! (You'll note I'm assuming these will help). And I so didn't take my tablet like that. Oops...
Chancery, for maximum absorption Levothyroxine should be taken with water on an empty stomach one hour before, or two hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen.
You can take Levothyroxine any time of day or night to help you schedule around other meds.
This is a link to the Abstract of the paper Marz referred to. There is a link to a pdf of the full paper on the right of the Abstract.
Oh dear, I took it right before eating, along with carbamazepine and a multi-vitamin, then after breakfast I added a pro-biotic on top. I can see I'm going to have to do some weird juggling here...
And thanks for the link - that's great. I'll go read it all now.
I would, Faith, if I had the first clue where to start. There seems to be SO many reasons for hypothyroidism, you are beaten before you start. I haven't got Hashimoto's (we think!) so where do I go from there? And it could always be Carbamazepine creating a fake test result, or creating hypothyroidism. Too many possibilities and no hard facts to work with....
If i could reverse this.. i would do almost anything to get my life back. If you don't have Hashi's, you are very lucky indeed and just try and get out of this mess, some how. You have a real advantage when you don't have autoimmune disease.
It would be terrible indeed, if a med that you had to take caused this. Do you have hypothyroid symptoms?
I agree, Faith. At first, it depressed me, not having a diagnosis, but with time I came to see how fortunate I was NOT to have autoimmune. It's really no picnic. I am looking into thyroid disruptors, but I suspect it's a combo of a pattern of many years overeating combined with stress (I'm a panicky worrier). I think both things together have probably done for me! It's undoing them that's the difficult part. I eat to soothe myself and worrying is so second nature, it's tough to not do it!
After reading your profile, done very well too..it is possible that you have autoimmune thyroid and just have such a low immune system , that the antibodies stay low. The only way to tell would be a biopsy and i doubt they would ever consider that. You may not be doing well on levo, many don't and need some t3 added in. Anxiety can be a symptom of Hashi's/thyroid disease, for sure. The fact that you gain weight when barely eating is hypo and autoimmune, in that autoimmune makes internal inflammation and makes levo not convert to t3 and dulls thyroid hormone receptors, so even for some, like me, t3 doesn't work anyway, not well. We have spoken before..i remember now.
Yes, we've had a few interesting conversations, Faith. I have worried about the antibody thing, because I have neutropenia, anaemia, low IgA - in short, my blood isn't exactly great on the immune front, so I've often thought, wouldn't that impact on antibodies? But my doc wouldn't test for others; he only tested TPO (I think it is?). He said there was "no point". You never know if you can trust them or not, I generally favour not, but what can you do? There comes a point when you just have to quit if they won't help.
The weight gain is a real problem, because I can diet and not lose weight. I actually have to starve to do it, as in seriously undereat. Unfortunately the last time I did that I made myself really ill and gave myself B12 and Vitamin D deficiencies, which possibly caused or worsened Trigeminal Neuralgia. I am really NOT keen on dieting ever again. Every time I do it, all the weight comes back plus some. That's not healthy. I know lots of people fib about their weight gain or loss but I'm not one of them. I know when I am overeating and freely admit it. But I can eat very strictly these days and not lose weight. Its frightening as well as depressing. But hey, maybe I've just screwed up my metabolism. Who knows?
Many, just get the tests they want, online without a prescription. Plus you may have Hashi's now, not then. You definately have something autoimmune going on. The weight gain is fluid, not fat from eating. I gained 30lbs in 3 months, barely eating, because my food wouldn't digest. I gained 7lbs overnight and 11 lbs in one week. I did not "sneak" thousands and thousand of extra calories..trust me. Go to youtube and put in "hypothyroid skin pinch test"..see if your skin is thick or you can life the skin easily.
Also, go to Dr. Mark Hymans website or google his name and autoimmune disease treatment.
I am using Function al medicine now, have to do some Stool testing, urine and saliva too.
P.S. Fluid retention only started in the last month or two for me (i.e. I haven't had it all the time since I was first diagnosed as hypothyroid) but I'm having terrible trouble with water accumulating round my ankles. Doesn't matter if I'm on my feet, sitting down, active all day, or sedentary all day, there it is, burning and itching and being generally unpleasant. I mentioned it to a consultant in hospital but all he said was "It's maybe just gravity at the end of the day". He was head of acute medicine too!
Me again, Faith. Nope, can't pinch my skin on my arms, it's just painful and slides out my fingers. No liftable skin at all. I'm pretty sure my whole body is the same. Not sure how reliable this is though? Couldn't this just be a female versus male thing? Or, dare I say it, just because I have fat arms!?
No..it is swelling from inflammation or myxedema, from thyroid, which is muccopolysacaride depositing in the skin. It is not Fat. Even fat people can lift their skin, if only from overeating and not accumulation of fluids. This test was used by "good" doctors in the old days, who knew how to look for signs of low metabolic rate. Like Broda Barnes...he also was very into temperatures.
Well thanks for that, Faith, I'm going to look into it further. I see there's a mention of it on thyroid UK. I've been like that a long time, I know. I often feel as if my skin is stuffed. I always thought it was my fat cells greedily filling up every time I eat anything resembling a carbohydrate. Now I'm wondering!
Here are some very awesome articles, that changed my whole perspective on the whole thing and really let me know, just how stupid the doctors are!! The info has been under their noses for over 100 years and thanks to fancy TSH tests and poor teaching, they know, now, very little.
Sometimes i feel like a sausage..all stuffed in my thick skin.
3,500 calories are needed to gain 1 pound. I doubt you are eating thousands of extra calories per day or even in a month!!!! You may have to convert this into UK measurements...but you need to get the idea that it isn't much fat, mostly fluids, unless you are gorging yourself. But, when your metabolic rate is low, you can barely be burning any calories. I read once where someone was only burning 700 calories per day , due to hypothyroidism!
Oh, no, definitely not. Yes, when I have a break down binge for a few days once every two months, but normally I'd guess I'm eating around 1,700 - 2000 calories a day, which is probably too much for my age, I admit, but no, I'm not a heavy eater. I just can't lose weight. I used to be able to cut sugar and lose weight like that. No longer, I'm afraid....
They were meaty - thank you, Faith. I found the photos on the Townsend piece particularly enlightening, even although they were very old. They could do with doing a collection of modern photos like that. It's a lot easier to pinpoint what's right and wrong when you can see direct examples like that. I definitely have the stodgy puffy face and body. My gran had it too, and she was hypothyroid, like all her cousins, aunts and, I believe, sisters. Curse their crappy genes!
We are all full of crappy genes!!! Keep in mind, that it seems, especially with this.."swelling" t4 like levo doesn't work very well, be prepared to need some t3.
Will do, Faith. I am well armed from reading threads on this forum - I've seen all the common problems, and help is seldom more than five minutes away here. A far better resource than the NHS!
Sounds so very Hypo. What dose have you started on ? You haven't screwed up your metabolism - but your thyroid is not working efficiently. However it will take time for your dose/treatment to be optimal and there may be several blips on the way. Think it will be tough with your Doc being so difficult. Do wish you could take things into your own hands and find wellness.
Hi Marz, he's started me on 50mg. I'm hopeful that something definitive may come of this at least, i.e. I might get some improved symptoms that will point if I'm going in the right direction, or my thyroid is the culprit. At least he thinks we're doing the right thing. I think that's the first time in all the time I've known him he's agreed with a course of action I wanted to take!
I remember he wanted you on T4 before - it was you that resisted I believe ! So he's not all bad !! 50mcg as you know is a starter dose and it will take time for you to notice changes. There will be lots of tweaking on the way.
When my Dog was diagnosed Hypo her dose was according to her weight I have often thought one size does not fit all....
Be patient ! You have probably been Hypo for years so it will not be an overnight sensation......
Yes, he did, right at the outset. I was indeed resistant to the idea - I was so doped up on anticonvulsants and didn't know how I'd know if thyroid meds were making me better or not. Unfortunately I've started antihistamines (Loratadine) at the same time as Levo and I am getting a daily migraine. Damn it.
I am so tired I can barely function. My suspect is Loratadine, since they cite headache as a side effect on the packet insert. So I have a bad feeling I might have a problem with antihistamines. Or at least this one. I hope to God it's not the Levo........
....me too ! I do remember when I started T4 I felt awful at one stage and just stared into space. Rang my Endo here in Crete and he told me to stop for a while and then I re-started. Everything then was fine - albeit I couldn't get above 75mcg. Now T3 only ....
Try to rest as much as possible and keep up the good fight
Oh no, that's not good. You mean it could be the Levo? Damn again. Well, if this keeps up, I'll have to try a drug 'elimination diet' and remove the antihistamine and see if the headaches clear up. If they don't, I could be in trouble....
...ooops sorry Chancery - of course I do NOT know which it is. I was trying to explain that sometimes the road to recovery can be a bumpy ride. Please go with your own instincts - it is possibly as you thought - the anti-histamines.
My step daughter - undiagnosed Hypo - has severe headaches which were rectified when she upped her iron. Her Ferritin was LOW. I recall you saying your Ferritin was good when last tested - but I wonder where it is now.... Not trying to put a downer on things - trying to be constructive....
Don't worry, Marz, my money's on the antihistamines. The pain is so severe (not to mention the nausea and blurred vision) that I'm going to skip the tablets tonight and see if it clears up. If it does, I'll give it a day or two then try reintroducing them and see if the migraines come back. But at the moment it's reminiscent of when I was on Lamotrigine. Don't want a repeat of that! Hopefully, if they are the culprit, the doc can give me another type that might be easier on the old cranium.
Chancery,I was taking Levothyroxine for 6 years over which time I developed all over itching and awful acne on my face,neck,chest and arms. I was referred to a Dermatologist whom I eventually managed to convince that I was allergic to the fillers and binders in the Levothyroxine.He did a biopsy which showed "auto immune disease".I do have Hashi's,and am now taking Nature Throid NDT,and my skin is finally healing beautifully,and the itching gone.
Hypothyroidism seriously messes with your skin.Please be aware that Levothyroxine may make it worse,if you are sensitive to ingredients. You can take a zinc supplement,which will help your skin,hair and nails.Don't despair,keep reading this site,and other books and sites,and educate yourself,so you go well prepared when you see your GP,because you may have a battle on yourhands,like most of us have,to get your GP to listen to you. Good luck!
Thanks, Fr. The rash is very old now and recently, after a development making it more obvious, it seems likely to be erythema multiform, i.e. an allergic reaction. My money is on Carbamazepine as the culprit, but not a lot I can do about that. I'm on antihistamines with no signs of success yet, but I'll persevere!
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A winge - itchy rash, recovering from pneumonia
My doc has put on my print off of my bloods as excellent please have a look
Rash with Carbimazole?
It's not my thyroid causing my symptoms
Thyroid function test and pets.
