My husband has had symptoms that the GPS cannot explain for over 2 and half years now. I'm probably going down the wrong route but would like to see if anyone knowledgeable in subclinical hyperthyroidism maybe able to offer some advice please.
These are his Tsh results with dates below and then the symptoms he has.
Tsh Range (0.55-4.78)
17/05/23 0.63 mu/L
24/07/23. 1.23mu/L
20/08/23 0.55 mu/L
12/12/23 0.78 mu/L
06/11/24. 0.36 mu/L
06/12/24. 0.7 mu/L
Free T4 range (10.3–24.5) 06/12/24
T4 11.1 p/mol
Thats the only one done recently.
Symptoms.
Chronic unexplained diarhorrea
Profuse sweating (heat intolerance)
Clammy skin
Unexplained weight loss of couple of stone last year.
Always hungry and picking.
Should be the size of a house for what he eats.
Nail problems and are weak and getting infected.
Large patches of brown discoloured skin that turned up last year.
Muscle pain and weakness
Depression, anxiety, memory issues and mood swings.
Nervousness and restless
withdrawal from social interactions
Keeps getting a vomiting bug every month or 2 for no reason.
His face flushes red like he is getting ill.
Thinning hair
Always exhausted.
Pain from last year started in his knees and ankles.
Shakiness in hands and fingers that comes and goes.
Balance problems. Cannot balance on one leg even for 5 seconds.
Also has fallen over as when walking he kept feeling like he was tipping forward over his feet.
Gp says he can see why I may think it could be hyperthyroidism but it's not.
Am I overthinking everything into thyroid issues as they can't explain anything.
Is it worth him getting a full thyroid blood test including antibodies or not?
Thank you in advance X
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debsmitch60
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Sounds like an adrenal gland deficiency- dire rear - exhaustion- snacking - everything you mention - including weight loss - why are you thinking hyper issue he would be over energetic not the other way around - even the knees is a clue - low adrenals can involve knees and ankles - also red face overheating his body is over producing adrenaline in my opinion - speak with GP and mention if he could have tests for adrenal problems as he obviously needs help asap !
Thank you for your advice. I'm so sorry I'm just replying as I have been quite ill. He doesn't get red faced often but he sweats and always seems Clammy.
The weight he had lost has come back on and if anything he could do with losing a few pounds.
I'm going to get full thyroid tests and saliva adrenal tests privately as the GP just doesn't listen. They have done every test for the constant diarhorrea and found nothing.
Now 6 months later they think they should do that again.
Thanks for replying. I thought hyperthyroidism because a lot of symptoms match. He has put the weight back on again now and could do with losing it. And if anything he is feeling a bit better. The red face has only been a few times. And I was more concerned as was he about the constant diarhorrea. He had his gall bladder out quite a few years ago and now the GP thinks he could have bile acid malabsorption and has given him 4g Colestyramine orsl suspension powder. So he has started taking that and it has stopped the diarhorrea but I don't know whether that stuff would do that anyway. Thank you x
Get him checked for Parkinson's, forward leaning walking is a symptom so is falls and it can also look like B12d. Apparently the wait list is long to see someone for that as I know someone who is on a wait list of 18 months. this is a good place to look they have a test as well. parkinsons-research.org/ind...
Thank you very much for your reply. I will make sure we speak to the GP regarding that too. Hechas been given treatment for Bile Acid Malabsorption as he had his gall bladder out dome years ago now. But as regards his stomach and diarhorrea, it seems to be working . I still think he has other stuff going on. He has already been on testosterone for quite a few years too. Thank you x
Yes thank you he has been given colestyramine to take morning and night 1 hour after meds. He is struggling with the mixture so the GP is going to try him on Colesevelam tablets one twice a day. How do you get on with your tablets? x
It has been shown to leave 4 hours in-between other meds, also it works at night and you would need less, we make bile at night so makes sense. I take 1 at night sometimes an extra one or half depending on what I have eaten. They are huge tablets lol.
Hello SlowDragon I have updated my post. Can you tell if I need to put it in a new post for help please. I can't think straight and not sure. Thank you x
Jumped out to me as adrenal issue. Has he had his cortisol tested? GP can easily request a cortisol test but it must be done at 9am. If it’s too low or too high then a short synacthen test must be done in hospital settings. This tests if your adrenal are functioning as they should. If they’re not they may prescribe hydrocortisone medication.
Look up on Google adrenal disease. The brown spots, vomiting, weight loss, in fact virtually all what you describe.
It could be Addison’s disease. Any adrenal disfunction is very serious. If I was you I would even be bypassing the GP now and going to A&E to be properly tested for Addison’s. If you mention Addison’s things will happen swiftly!! Your GP should have picked this up a while ago!!! Don’t mean to alarm you but this could be very serious.
Thank you for your information. No thry haven't tested his cortisol but I am going to bypass the gp and get saliva adrenal tests done as well as thyroid tests. We mentioned the brown marks that came up under his arms and the gp said it was nothing to worry about.
Personally I would go to A&E and mention Addison’s disease to them. You will get all the bloods checked you’ve mentioned and more and the and results will be back immediately. All results will then be on his NHS file too. You don’t want to delay anything to do with the adrenals really as if he has an adrenal crisis it can be fatal. I’m not saying this to scare you in any way, adrenal deficiency best dealt with urgency. It’ll take up a few hours of your day. It’s worth it on this occasion.
debsmitch60 As McPammy said, if this is cortisol related, this needs to be dealt with as a matter of urgency. Same Day Emergency Care is probably where your husband needs to be, or A&E the moment things seem to be getting worse. To get to Same Day Emergency Care will likely need your GP (or 111) to organise an early morning cortisol blood test. Whether or not saliva testing provides accurate results is unfortunately irrelevant in this situation - the vast majority of NHS doctors will only pay attention to an early morning cortisol blood test, so time is just wasted organising a private saliva test in this situation, time when your husband is potentially at risk. Given that it is Friday, it might be worth even getting the GP to do a cortisol test this afternoon as an emergency. The result is less useful in terms of analytics, but if it is well out of range your husband might get seen and treated today or tomorrow. Please don't delay.
Thank you for replying. He has been like this for over 2 years now. If anything i think he will ask the gp to do an early morning cortisol test and I will get through private thyroid tests. Thank you x
I think you need to consider an Adrenal issue, like Addisons or secondary or tertiary adrenal insufficiency. It can lead to an adrenal crisis and can be life threatening. Has he ever taken prescribed steroids in the last year, for asthma or any other condition like eczema, arthritis, as stopping steroids like Prednisolone can cause the adrenals to stop working?
Has he got any autoimmune conditions or are they in his family? He needs to be tested as a matter of urgency.
Thank you for your reply. No his family don't have anything like that and he has not been on steroids. I know about adrenal issues as I have partial adrenal insufficiency myself but thats another thing. I will get full thyroid tests and also adrenal saliva tests to be sure as gp is hopeless. Thank you again x
Your husband must be feeling horrible and I can see why you are both worried. I don't know much about the thyroid so I'll leave that to others. However getting a full blood test for thyroid is never a wrong move -even if it shows nothing, at least you can then move onto something else.
Regarding the diarrhea and vomiting:-
For years I thought I was getting a stomach bug every month or so but it wasn't a bug. I discovered I was allergic to gluten. It would stop my intestines from working. The toxins would make me chronically tired and then I would go through a stage where I was always hungry. Basically I was starving even though I was eating. The gunk in my intestines would eventually mean that nothing was getting through. Diarrhea is actually a symptom as the intestines are blocked and only diarrhea can get through. Then when it got too much, I would wake up in the middle of the night nauseous and start vomiting. The vomiting would continue every half an hour for quite a few hours. This was a constant for quite a few years until, at the age of 26, a doctor diagnosed the gluten intolerance.
It is not coeliac disease but for me it is as diabolical as coeliac.
People who get eye glasses later in life often realize how much they had been missing. After going off gluten, I realized how much energy I had been missing. I couldn't remember having that much energy since primary school. I had gone through my teen years with an enormous lack of energy and constantly getting ill.
I had got the diagnosis when I was on a working holiday in England from a specialist doctor. When I got back to my own country, I eagerly told my GP. I thought he had listened but as I left his office he said, "Now don't take it too seriously , will you love?"
I never went back to him.
A hair analysis won't tell you about vitamins but it will diagnose mineral deficiencies and toxic metals. It is a great adjunct to blood tests.
Thank you very much for your reply. It's been horrible for him as having embarrassing accidents at work. He has been given treatment for Bile Acid Malabsorption last week that seems to be working atm for the chronic diarrhoea . You sound also like you have been through an awful time I'm sorry to hear. I hope you are managing better now but it must still be hard x. He has also been cleared for coeliac disease but could be similar to you. Thank you so much for your help and thank you for wishes. I'm so sorry I'm just replying to you, I have been so ill myself with hypothyroidism symptoms despite treatment. I have had swollen glands under my ear lobes and at the side of my face and one under my chin. My daughter says face has changed as its puffy. I also have enlarged saliva glands under my tongue. I have rang the GP who passes me off as an endo patient and doesn't treat me. But I'm going to get a face to face with a gp this week. Sorry for blurting that out. I just feel so ill and struggling to help us both. Wishing you all the best too x
Has the GP not sent you to different specialists over the 2 and a half years? Can you go to a doctor who is interested in discovering what it wrong and referring you on to those who have specialist knowledge in different areas?
debsmitch60 Tell GP or 111 that adrenal problem suspected, most likely Addison’s and that testing required urgently. Same Day Emergency Care is probably where he needs to be. If the symptoms get worse call 999 immediately and report suspected adrenal crisis.
If waiting for appointment at SDEC, post pictures of skin pigmentation, as that could make it clearer whether likely to be low or high cortisol (both have skin effects)
Thank you for your reply. I will take some photos of the brown patches asap. I have secondary adrenal insufficiency myself and do not feel any better on hydrocortisone. So now I'm on nothing until I see the endo on Jan 6th 2025. The GP is treating my husband for Bile Acid Malabsorption since last week and it seems to be helping the diarhorrea at least atm. Thank you again x
debsmitch60 Sorry, a pile of questions as, if I read that correctly, you’ve stopped taking HC for diagnosed AI, which can not only make you feel ill, but also put you at risk of potentially fatal, adrenal crisis… What doses of HC were you on and what times did you take them? When you stopped taking the HC, at what rate did you taper, or did you just stop suddenly? What was your last early morning cortisol blood test result, your SST results and your ACTH result when diagnosed? When were you diagnosed? Did you have a day curve done to check your HC dosing? When you say secondary, do you mean that you have a pituitary issue (checking as people with tertiary, steroid-induced AI, often get told incorrectly that it’s secondary rather than tertiary)?
JumpJiving Sorry I can't even remember when.i was diagnosed as I can't think straight. It was around 2 years ago. I hurt my spine at work when I was 26 and was fobbed off in agony abd scoliosed sideways for 2 years. Had surgery after paying to see a neurosurgeon. Still had severe sciatic pain and now i have discs out at each section. But the point was they put me on opiates and never told me of any dangers and have been on them for years. I was diagnosed with hypothyroidism in 2015 and am on 20mcg T3 x 3 times a day. I couldn't take T4 as made me feel rubbish but I have never been right. I have always had hypothyroidism symptoms and then found out in 2019 that my estrogen, testosterone shbg and dhea were in my boots. I paid to go to a menopause clinic and they struggled with gel and then patches becsuse I wasn't absorbing. Eventually thry put me on Sandrena gel and testogel and I started absorbing it. They said if they got me to a decent level and I was still symptomatic then they would say it was definitely thyroid related. My thyroid levels have been dropping but last week thry wanted me after complaining to Pals to take a T3 test 4 hours after my last dose. I found it odd but did and they did a cortisol test that he said was slightly high. I had my own saliva cortisol tests twice and I took them to ghe consultant as I kept telling him as well as my thyroid I was sure I had low cortisol symptoms. He did a test where they take 5 blood tests. The 3 in the middle were low and they said I had partial secondary adrenal insufficiency due to long term opiates. They gave me 20mg hydrocortisone to take 10 then 5 and 5. I was on that for quite a while but I didn't feel any better. So I tapered down and stopped them. I have been emailing the Endocrinology dept but never answered apart from my old endo contacting me to start taking them until I had my hip replacement. I had that 13/11/24 but had stopped them again as I kept getting a sore tongue. I have just had another doctor under my new professor endocrinologist and tell me my T3 was fine at 8.1 after 4 hours. I said I had mistakenly taken a tsh test after T3 last year and that was 10.1. He has sent me another blood rest form as I said I want a normal blood test. He also said I may not need any cortisol as thst test was a bit over. I said how when I am still taking opiates. I had the surgery and it went well but I havd gone downhill since. My daughter said my face looks puffy, I have had the glands by my ears and side of my face up for over 4 weeks or more. I have swollen glands under my tongue. Today my stomach started again bloating and a ring of pain, feeling nauseous and have had absolutely no appetite for well over a year. I have put on a stone also but I know it's because my T3 is dropping. My tsh taken normally is normally 0.3 or thereabouts but is jumping to 1.75 and I told him its not normal. To be honest I just feel ill and was going to get a private cortisol saliva test and thyroid as I feel desperate. They don't care and I have to try and help myself as im slowly giving up. So sorry for the long reply. Thank you for asking though x
debsmitch60 Sorry that you've got so much going on. Too complex to even try to unravel without repeating a pile of tests. However, the one thing that I can pick out from that is that you appear to have tapered completely from 20mg of HC per day at the time of your surgery on 13/11/24 down to nothing in the space of a month. That is far too fast for tapering from a full replacement dose unless an early morning cortisol blood test has shown that your body is producing an adequate level of cortisol naturally (unlikely if your HPA axis has been suppressed).
Suggested tapering regime (using prednisone units, so multiply by 4 for HC) can be found at academic.oup.com/view-large... . Based on that, tapering from 20mg of HC should take 16 weeks at the very minimum (many people find it takes a lot longer), and even that is only when the original cause of the low cortisol has been resolved. If opiates caused adrenal insufficiency and you are still taking the same dose of the same opiates, you should probably still be taking the HC.
Thank you yes I do tbh but I'm determined to get to the bottom.of it as i feel so low atm and don't want to go anywhere lower. They gave me iv steroids for my surgery but he said he was more concerned that my thyroid treatment wasn't optimised from my results and I needed them to be to recover. If anything I have been on more opiates since my hip as it was horrendous so I don't get any of it either. I also started to lose my libido in 2017 and despite trying to sort my female hormones out I havd never got it back. Thst doesn't seem important in the grand scheme of things but it's always been important to me. The only time I ever felt like everything was turning back on in my body was the first time I was given 20mcg T3 for around a week then it was gone. I had energy., felt hungry, sharp and no brain fog and also my libido came back too. Then despite now being in 20mcg 5 times a day I have never felt normal to me. One of the doctors said thst dome people don't get on with hydrocortisone but they are waiting until they see me on Jan 6th. I am going to get my female hormone blood tests and I had a thyroid blood test yesterday. Now I thimk I should get a cortisol saliva test as thsg was what I had to do to convince them last time and thsts when they gave me the CRH test. Thank you for the link and your advice as its really appreciated. I just can't think straight and my immune system seems to have deserted me to. Who has swollen glands for over 6 weeks and dizziness etc. Take care and thank you again x
debsmitch60 Regarding libido, particularly if you have also lost underarm and pubic hair, you may find supplementing DHEA worthwhile (you mentioned that your DHEA level was in your boots). It's not completely risk-free, but personally I would be tempted to take it to get DHEA-S back into the reference range at least. Thankfully, blood panels from before I developed adrenal insufficiency meant that I had a record of what my normal level was, so when mine also ended up in my boots after developing adrenal insufficiency, I had a target to aim for when supplementing (it's considered more significant for women than men, but I still felt better when I started taking it).
Some endo's recommend DHEA, some don't. The little research that has been done seems to suggest it is worthwhile, but it's not completely clear cut.
JumpJiving I was referred by my old endocrinologist to an endocrinologist in Birmingham for a 2nd opinion but got her underdog instead. He said my morning cortisol was normal and I should stop taking the hydrocortisone as I didn't need it. He said to try dhea for 6 months regarding libido but I didn't like his attitude. Basically it didn't matter if I had one or not. This was a more than a year ago. Sorry unless I trawl through paperwork for dates I just can't remember. However I put quite a bit of stuff on her in my bio too I think. Anyway I just stopped thst hydrocortisone dead and was really ill. This doctor rang me the day after and asked how I was and I said I was really ill and extremely exhausted. He then said start taking 10 in the morning but if you still feel ill take another 5. I just thought sod off I'm not taking them as you don't seem to know what you are doing. Anyway a few dats later my hp rang me and could tell I was ill plus crying and I explained. He said I font care what he has said but I'm telling you to take them. I started and although not as bad, still not great. The dhea he suggested to take I had to buy from the USA as he said they don't prescribe it here. I started on 25mg every day snc although it's some up i still have no libido. So I have gone from a person with slightly higher than average libido to not low but absolutely none. I just don't feel attractive or feel good or have that sense of well being as well as really putting a toll on my marriage. I believe regardless that we all should supplement failing dhea as we age. I have a really good book by Stephen Cherniske, M.S called The Dhea Breakthrough that you might find interesting. I'm glad you had blood tests from before whereas I haven't. Can I ask what steroid you are on and how you feel please? I hope you feel well x
debsmitch60 I was diagnosed with adrenal insufficiency a year ago after being increasingly ill for the preceding year. It is thought that mine was caused by a steroid-based asthma inhaler. I was initially started on 20mg of hydrocortisone per day, with the usual split of 10/5/5. My initial endo was, IMHO, terrible. I got myself a referral to a recommended endo not far away, who was much better. I also learned (and continue to do so) as much as I can about adrenal insufficiency (and to a degree Cushing's and other cortisol-related conditions as well). I experimented with HC doses and schedules and found that I stabilised and felt significantly better on a total of 22.5mg of HC per day, split across up to 6 doses through the day. I also started on 25mg of DHEA per day. I found that I needed to increase my levothyroxine as well, as my hypothyroid symptoms got worse as the AI developed. Once I stabilised, as I removed the cause of the AI, I started tapering in an attempt to reverse the adrenal insufficiency (most people cannot do this, but I am one of the lucky ones who may be able to). I tapered the DHEA, first to 20mg, then to 10mg, then to 0mg. I am still tapering HC, and am currently down from 22.5mg per day to 12mg per day. I had my latest blood test this morning, so will decide how to proceed further once I have the result of that.
In terms of how I feel, on 22.5mg of HC per day and 25mg of DHEA, I was feeling near normal. Whilst tapering, there is a period after each taper when my body's cortisol production is catching up with the reduction in HC, so I end up with fatigue etc., but that is to be expected. Once my early morning cortisol gets to a decent level (450nmol/L perhaps, from a recorded low of 39nmol/L a year ago) then I'll make a decision as to whether to just stop whatever dose I am on at that point, or whether to speed up the taper significantly. I am already at a point where in preparation for my early morning cortisol today, I was not stressed by not having any HC for a while beforehand (I only had 9.5mg yesterday as I didn't have the final 2.5mg dose yesterday) and I felt ok this morning.
One thing I would say based on your last post, is that HC has a short serum half-life and a shortish biological half-life. As a result, if you take just one dose per day, or even two, it will be out of your system long before your next dose. Whilst you may get away with this when your body still produces some cortisol itself and whilst your total dose is below the physiologic daily equivalent (at which point it would be suppressing your body's natural production), I would not expect you to feel well doing so. Splitting into multiple doses (a minimum of 3, but ideally more), ideally following the circadian pattern of a healthy body, is likely to leave you feeling much better. Sudden stops of HC will also leave you feeling ill, and can be very dangerous.
Hi again - sorry to hear you have been unwell hope you feel better soon. On looking at one of your posts this morning I see your hubby is on 'high dose' Vitamin D and Omega 3 6 9 - and with my nutritional hat on - most if not all of his symptoms could be related to taking these supplements as his kidneys and liver are on overload.
I am attaching some links here to show you the toxicity symptoms - the only way to find out if this is his problem is to stop taking them altogether. If the symptoms continue then obviously you go down another route.
Omega 3's can cause dire-rear as a typical symptom and certainly D has the potential to cause the flushing etc. and the weight loss and then gain could be related to his liver trying to clear the supplements it obviously does not want or even need.
Supplements whilst helpful on some occasions can also be a problem particularly if you are on a medication that can cause interaction between the two.
I always go easy on supplements if it says take 6 a day or 4 a day or whatever I take ONE. The human body likes to get it nutrition from food and obviously there are some people particularly thyroid patients or indeed myself who have malabsorption issues therefore vitamin and minerals need to be taken but once again not to excess. In fact there was an article in national press last year where heart consultants are complaining about the number of people they are getting in for by pass surgery etc. who are taking high doses of D - in particular taking cod liver oil - and their arteries becoming calcified.
Thank you I have had this virus going around and slowly have thyroid and adrenal insufficiency. He has stopped all vitamins atm because he is going to have blood tests.
Thank you for the links. I will read them.
It honestly seems you can't do right for doing wrong.
It's so hard as we take vitamins to try and feel better and then even they can make you ill.
Might be advisable to reduce the amount he is taking of these supplements slowly not stop immediately as it may shock the blood clotting system of the body.
I’m really sorry to hear your husband is going through this. Based on the symptoms you've described, it does sound like something may be affecting his thyroid function, even though his TSH levels seem to fluctuate within a normal range. While subclinical hyperthyroidism typically involves low TSH with normal thyroid hormone levels, the symptoms you’re describing—such as weight loss, heat intolerance, muscle weakness, and shakiness—can overlap with thyroid issues, especially if his thyroid function is unstable.
Given the ongoing symptoms and that his TSH is fluctuating, it could be worth considering a full thyroid panel, including Free T3, Free T4, and thyroid antibodies (like anti-TPO and anti-thyroglobulin). These can help detect autoimmune thyroid conditions like Graves' disease or Hashimoto's thyroiditis, which could explain some of the symptoms, even if TSH appears normal.
Additionally, since symptoms like chronic diarrhea, muscle pain, and unexplained weight loss are also concerning, it might be worth exploring other possible causes, such as autoimmune disorders or gastrointestinal issues.
It’s understandable to feel frustrated when there are no clear answers. I would recommend pushing for a more comprehensive thyroid test, and possibly consulting with an endocrinologist, who might be better equipped to investigate the thyroid further and offer additional insights.
Thank you so much for replying. I have looked into a lot too and i keep.coming back to some sort of thyroid issue too. He had his gallbladder out quite a few years ago so a bit strange that the gp now thinks it could be Bile Acid Malabsorption and gave him some treatment for it called colestyramine and ot seems to be working after over 2 years of struggling badly. I read up.on that too and it did say it can that hyperthyroidism, do you think he should stop it in case it gives a false reading for the thyroid tests please? I'm going to get private thyroid tests with everything you and SlowDragon suggested. Thank you so very much x
You're very welcome! It’s great that colestyramine is helping after such a long struggle—it can be a game-changer for Bile Acid Malabsorption. Regarding the thyroid tests, colestyramine is known to potentially interfere with the absorption of certain medications and nutrients, but it shouldn't directly affect the thyroid hormone levels in blood tests. However, it’s always wise to let the healthcare provider know about any treatments he’s on before testing, as this ensures accurate interpretation of results.
Thank you Albatrossss so much. I will make sure they know everything. He has been on lolopamide tablets for ages as thats all they gave him but didn't work most of the time. I hope you are well and I'm just going to look where I can order from. SlowDragon gave me a few links so.i will start there. Thank you x
If he is taking the colestyramine then, if it does have any impact on thyroid hormones, you need results while he is taking it. Otherwise you are causing a false situation at the time of the test.
It does not interfere like biotin (i.e. in the lab doing the test). It affects absorption of thyroid hormones and, possibly, excretion and reabsorption.
I think you meant to reply to Albatrossss but ended up replying to your own original post!
Oh yes he is at the moment helvella. Thank you I'm all over the place so I will look and try and copy and paste it into the right place. He isn't on any thyroid hormones and yes I thought it would act like biotin but thank you as I wouldn't have like him to stop taking it. Thank you for being kind enough to reply and for your advice x
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