I have have been really struggling with always feeling too hot for a while now. Even in winter, needing fans as cool baths etc. Does anyone suffer this from being hypo? I had assumed it was more hyper. Not currently diagnosed yet. It's tough to deal with though.
Can feeling too hot all the time be a symptom o... - Thyroid UK
Can feeling too hot all the time be a symptom of hypothyroidism?
260 Replies
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SeasideSusieRemembering
I was diagnosed hypo 44 years ago, I've ever felt hot, always colder than everyone else.
Have you had thyroid antibodies tested to see if you have autoimmune thyroid disease? Thyroid Peroxidase and Thyroglobulin. If these are raised, even with "normal" TSH, FT4 and FT3, this suggests Hashimoto's and you get symptoms of both hyper and hypo.
Maybe post your results for any tests carried out, including reference ranges which are usually in brackets after the result, and members will comment.
in reply to SeasideSusie
Total t4 99 (59-154)
TSH 2.67 (0.27-4.2)
Free t4 17 (12-22)
Free t3 4..6 (3.1-6.8)
TPO antibodies 109 (<34)
TG antibodies 107 (<115)
That's the most recent. The highest the TSH has ever been. It's usually below 2.0
TPO antibodies 109 (<34)
TG antibodies 107 (<115)
There you have it. Elevated TPO antibodies suggest Hashimoto's. Raised antibodies can suggest other conditions but with elevated TPO and high in range TG antibodies, although not over range, Hashi's is the most likely.
Article about antibodies (ignore their ranges, they're not universal):
verywellhealth.com/thyroid-...
Your TSH, FT4 and FT3 are currently within their normal ranges so you can't get a diagnosis of hypothyroidism. Hashi's is where the immune system attacks the thyroid and gradually destroys it. Your thyroid is still functioning at the moment. You will need an over range TSH and lower FT4 to be diagnosed with hypothyroidism. In the UK we usually have to wait until TSH reaches 10, when raised antibodies are present, if TSH goes over range an enlightened doctor should initiate treatment with Levothyroxine.
When having thyroid tests, always advise here is to book the first appointment of the morning, no later than 9am, and fast overnight from evening meal/supper, water only to drink before the test. This gives the highest possible TSH which is needed for diagnosis.
General information about Hashi's:
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.
Essential to test
Vit D
B12
Folate
Ferritin
Unfortunately, most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
in reply to SeasideSusie
Hi thank you for all that information. I've been back and forward to the Dr with different symptoms. The heat being the worst thing just now. So i will eventually develop hypothyroidism? Just a case of not knowing when 🙄
So i will eventually develop hypothyroidism? Just a case of not knowing when
Basically yes. Keep an eye on your test results. Depending on your doctor and how open s/he is to autoimmune thyroid disease, point out your raised antibodies and what you have researched about Hashi's (they don't tend to call it Hashimoto's in the UK so stick to autoimmune thyroid disease), then ask for regular tests to keep a eye on your TSH. When it starts climbing and gets near the top push for a diagnosis. Maybe even a referral to a thyroid friendly endo (hard to find, they're all usually diabetes specialists). Mark off your symptoms from this list as further evidence:
thyroiduk.org/tuk/about_the...
Try to help yourself as much as possible in the meantime. Thyroid treatment - or problems obtaining it - in the UK is cruel.
in reply to SeasideSusie
The last test i had done privately. I'm reluctant to go back to the gp now as she always insists no thyroid problems. Have mentioned the antibodies but she just said they won't cause any symptoms. So thinking will test again privately in 3 months?
3 months is sensible. See what results are like then, follow advice about early morning, fasting test. Do vitamins as well. Medichecks Thyroid Check ULTRAVIT or Blue Horizon Thyroid PLUS ELEVEN. Both have special offers on at the moment.
medichecks.com/thyroid-func...
bluehorizonbloodtests.co.uk... - use code "thyroiduk" for £20 off.
You have 6 months to use a Medichecks kit and 12 months to use a Blue Horizon kit, from ordering.
in reply to SeasideSusie
Thank you. I will book an early appointment. On a personal note. I've also developed a very overactive bladder. Which makes my life quite restrictive. Could that also be thyroid related?
I think some members have mentioned bladder problems, it's not something I've experienced myself.
in reply to SeasideSusie
OK. Thank you. I'm just finding it really tough at the moment. This forum is a God send. So much helpful information.
Gcart in reply to
Hi Macey 2002. I knew every public loo in UK before hormone replacement after TT.
Now that dept is normal 🙂
This forum is how got better , keep reading . Good luck
in reply to Gcart
Hi i am the same. It makes my life so restricted. Can't travel very far and only to.places where I know there's a toilet near by.
FancyPants54 in reply to
The bladder issue and the over-heating at all times can easily be attributed to peri-menopause or full menopause. How old are you? Peri can start for some women in their 30's so it's never too early to ask your doctor to investigate that side of things for you.
in reply to FancyPants54
Hi i am 37. That's already been investigated. My oestrogen levels have been checked. So the menopause has been ruled out
FancyPants54 in reply to
Not really. You needed 3 blood tests 6 weeks apart. Did they do that? In Peri your oestrogen levels can be really high then very low in a matter of a couple of days. Menopause treatment in the UK is as much a lottery as thyroid treatment sadly.
Don't let a single blood test stop you continuing to investigate that possibility.
in reply to FancyPants54
No. I didn't have those tests. My gp would be reluctant to investigate i think. As the last time i spoke to her about the heat she said if it was the menopause it wouldn't be constant and it would be cold sweats too
FancyPants54 in reply to
I'm afraid she's just ignorant of menopause. So many are. At your age the 2 tests 6 weeks apart are vital to know what's going on. And the sweats and heat is different in everyone. I have had around 4 actual hot flashes that's all and I'm well into actual menopause now. But I'm hot all the time. Fans on. Windows open. Car air con a delight. I can't remember the last time I needed a jumper in winter. If I do the slightest job requiring effort like putting the washing away I pour with sweat and my head feels very over-heated. I am on both Levo for thyroid and HRT. So no, you can't believe your GP on that one.
Ring the surgery and ask if they have a particular doctor or nurse practitioner who specialises in the menopause and book to see them.
The best web resource for up to the minute menopause information and guidance, including guidance for GPs and what to ask for can be found at the Newson Clinic web site. menopausedoctor.co.uk. It might not be anything to do with menopause yet. But it's something we are not taught about and don't really expect to happen despite knowing it will. There is so much misinformation out there about it too. Even if it's not this for you now, if you educate yourself about it you will know what to look out for when symptoms do start to rear up.
That should have said "2 blood tests 6 weeks apart". Typo sorry.
EnglishSpringer in reply to
I have exactly the same problem. I also suffer from overheating most of the time regardless of the weather.
in reply to EnglishSpringer
Hi there.
I am the same. It makes no difference with the weather. I actually feel hotter in winter. Are the hypothyroid? It's confusing as the heat is usually associated with hyper
EnglishSpringer in reply to
Yes I am definitely hypo. I always thought cold was associated with hypo but I have the opposite problem. I have a ceiling fan in the bedroom but my other half wouldn't let me have it on the other night when it was so hot because of the noise it makes (which I don't notice) so I ended up sleeping on the sofa with the back door open! Nobody understands how much we suffer!
in reply to EnglishSpringer
Aww poor you. I can totally sympathise. I live with my son. So in had to buy him an electric heater for his bedroom for the winter. As I can't have the heating on. You're right though. No one does understand how awful it is.
Does your medication not help a little?
EnglishSpringer in reply to
No not at all. I joke that my thermostat is broken. I wondered if it was something to do with the thyroid but wasn't sure, but after reading so many other people complaining of the same thing on here, I am now convinced it is thyroid-related. I am way past the menopause - and it's not like the hot flushes you get with that.
in reply to EnglishSpringer
My thermostat has been broken for years. It started with always being freezing. Even in summer. Now it's the awful heat. I miss the cold days. So much easier to keep warm than to cool down. I assumed it's all thyroid related too. Just my bloods aren't high enough yet for treatment.
just wondered if you /anyone knows whether fingerprick testing is as accurate /reliable as a blood draw?
I have done a fingerprick test within a couple of days of a test at GP surgery, same conditions (time, fasting, no levo) and when working out the percentage through range - because the ranges are different - they were virtually identical.
thanks -that's helpful to know.
Batty1 in reply to
Menopause can also make you hot and so can Hypothyroidism , I have both and I can not tolerate humidity problem is figuring out which one.
in reply to Batty1
Hi i'm assuming it's hypothyroidism then as my oestradiol levels have been checked. I'm 37.
The problem being that my levels aren't high enough for treatment yet
am i right in thinking it used to be if your tsh went over 5 you were diagnosed with hypothyroidism? Is it now 10 and is this a new? i was put on levo 5 years ago when my tsh was 5.5.
thyroidnodules
I think so, but I don't know when it changed to 10. I was diagnosed 44 years ago without being told a thing.
Can I jump in here please? I don’t have raised TPO antibodies but I do have raised TG antibodies but not sure what that means exactly. I’m seeing an Endo soon and would like to have as much understanding myself as possible.
Mickeydooley
You had members suggest you had Hashimoto's in reply to your thread here
healthunlocked.com/thyroidu...
Your TPO antibodies were 22.3 (0.0 - 34.0) when tested. This is quite high in range and with a level like that I would expect to see it over range when tested another time, confirming Hashi's.
You can have Hashi's with raised TPO antibodies alone, raised TPO and Tg antibodies, raised Tg antibodies alone (but there can be other reasons for raised Tg antibodies, worth a Google), and you can also have Hashi's when antibodies aren't raised.
Thank you for the clarification. I have read many threads and was getting confused. I thought from some of the responses that you needed TPO antibodies as well.
in reply to SeasideSusie
Hi seaside Susie. I forgot to ask. My gp tested my tpo antibodies last year and they were over 1000. Not sure why as my TFT always hovered around 1.5 (0.27-4.2) and the T4 was around 19 (12-22)
Would that level of antibody confirm hashimoto's? Not sure the relevance of the dr testing it at the time as it was never mentioned or the relevance of it or how high they were.
Hidden
My gp tested my tpo antibodies last year and they were over 1000. ..... Would that level of antibody confirm hashimoto's?
Definitely, as mentioned in my original reply above:
Elevated TPO antibodies suggest Hashimoto's
in reply to SeasideSusie
Hi thank you. Struggling now with the heat. Despite colder weather. Fans on all the time. Spoke to my gp last week about the fatigue. She mentioned CFS. When I am.so exhausted it's like my brain goes all foggy. Can't think clearly or concentrate on anything. Can't help but wonder if it's all thyroid related
CFS - Chronic Fatigue Syndrome.
Syndrome = a group of symptoms.
Ask your GP for a blood test which confirms CFS - she wont be able to do one because there isn't one.
CFS is typically a lazy diagnosis, one given when they haven't worked out what the symptoms are caused by.
Remember that doctors have very little training in thyroid disease and can be quite ignorant about it, and most doctors tend not to attach any importance to raised antibodies.
You have Hashi's although not yet diagnosed. Hashi's cause fluctuations of symptoms and test results.
When I am.so exhausted it's like my brain goes all foggy. Can't think clearly or concentrate on anything. Can't help but wonder if it's all thyroid related
Symptoms of hypothyroidism. A hypo phase of Hashi's (or undermedication)
TSH 2.67 (0.27-4.2)
Free t4 17 (12-22)
Free t3 4..6 (3.1-6.8)
Although these results can't yet give you a diagnosis, your TSH is too high for a normal healthy person, which generally would be no more than 2. Your FT4 is half way through range which would be considered just about OK for a normal healthy person.
What you need is a test showing TSH above the reference range (but not necessarily as high as 10) with raised antibodies. That should then get you a diagnosis of autoimmune thyroid disease and a prescription for Levo. The trick is to get the timing of the test right, do it at a time when you feel symptomatic - check symptoms here:
thyroiduk.org/tuk/about_the...
and make sure you follow the advice for how to do thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
in reply to SeasideSusie
Thank you for all that helpful information. I find it difficult now. Even going out for a few hours. Cinema or lunch I get totally exhausted. A feeling I find hard to describe to a dr. I have ordered the eleven plus test from blue horizons. Because despite supplementing with 3000 vit d spray daily and eating lots of iron rich foods, my vit d levels and ferratin levels are going down
What's your Vit D level? Are you also taking D3's important cofactors - magnesium and Vit K2-MK7? Magnesium is important as it's needed for our bodies to utilise D3, it converts it to the active form.
Post your new results when you have them for comment.
in reply to SeasideSusie
My Vit D was 111 in may and dropped to 87 in June. I have been taking magnesium too. My ferratin was 56.4 in may then dropped to 32.9 in June
Hashi's really can trash nutrient levels. Your ferritin is far too low. Low ferritin can suggest iron deficiency anaemia, you'd need a full blood count and iron panel to confirm that. It's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. This article lists symptoms of low ferritin (ignore reference to supplements, I'm linking purely for the symptoms which are listed a little way down:
Also listed in this article:
healthline.com/health/ferri...
As for your Vit D, double check your spray, I expect you're using BetterYou. If so is it the green one - DLux 3000 where 1 x spray = 3,000iu D3, or is it the red one - DLux+ Vitamin D+K2 where 3 x sprays = 3,000iu D3?
If you are definitely taking 3,000iu daily and you're level is dropping, you might want to try an oil based softgel, eg Doctor's Best, as this has best absorption of all the swallowed D3 supplements and has worked well for some Hashi's patients.
in reply to SeasideSusie
Hi it's the better you dlux 3000. Green bottle. Just one spray a day. I have been using it since Jan as my levels then was 25.3
I just don't know how to.boost my ferratin. I'm eating lots of iron rich foods.
I guess looking for help and advice too as i get nowhere with the Dr's. Might know more re nutrient levels when re-tested again
I just don't know how to.boost my ferratin. I'm eating lots of iron rich foods.
In that case why not ask your GP to do a full blood count and iron panel which would at least rule out (if that's the case) iron deficiency anaemia.
What iron rich foods are you eating?
I successfully raised my ferritin from 39 to 119 over a number of months by eating 120-140g of liver a week.
For your Vit D I would either increase the amount of D3 you take or try an oil based softgel to see if that makes a difference.
in reply to SeasideSusie
I am a bit reluctant to ask my gp as she would think that level is perfectly fine. Would probably end up doing it privately. I have been eating lots of red meats. Steak, beef etc. Broccoli with every meal, asparagus. Liver pate and pistachios and Brazil nuts.
Would you suggest 2 sprays a day then?
Where could you buy the soft gels?
Would you suggest 2 sprays a day then?
Why not try alternate days with 2 sprays. Or the softgels.
Pork liver has the highest iron content of all liver, followed by chicken liver, and liver has higher iron content than red meat. Chicken liver pate is suppososed to have the same iron content, gram for gram, as chicken liver. However, whereas a meal of 100g liver is a reasonable size, would you eat 100g of liver pate in one sitting? I dont' know as I don't like pate.
The British Diatetic Society has a good list of how much iron is in certain foods:
bda.uk.com/foodfacts/iron_f...
in reply to SeasideSusie
I really dislike the taste and texture of liver. I tried cutting it up small and putting in a stew but couldn't manage it. So pate is the only option.
I will alternate the sprays.
Thank you 😊
It most definitely can be a hypo symptom. It was mine. I always felt too hot before I was diagnosed. Spent many a winter with no heating and the windows open. I'm pretty much normal, now, but still don't like the heat. I have Hashi's.
in reply to greygoose
Hi Greygoose
Thanks for the reply. I never really feel well now but the heat certainly makes me feel worse. And the fatigue and lack of energy is getting worse now too.
greygoose in reply to
Well, you have Hashi's, so it's going to carry on getting worse, I'm afraid. And your TSH says your thyroid is already beginning to struggle.
in reply to greygoose
I'm finding it bad enough already. I don't know if i could cope if it gets any worse 😢
greygoose in reply to
Have you had your vit D, vit B12, folate and ferritin tested? If nutrients are low, that could be adding to your symptoms.
in reply to greygoose
I'm having them done on monday. I was vit deficient but supplemented and it's now 111. My ferratin was 56.7 so have been eating iron rich foods. So will see if it's improved any.
Grey goose, Can you still have Hashis after thyroidectomy?
High levels of TPO/Tg antibodies might still hang around for a while, to clean up any remaining traces of TPO/Tg in the blood. But, even if there was immune system activity, there would be nothing to attack, so there couldn't be any change in hormone levels or symptoms.
in reply to greygoose
Hi greygoose
My tpo antibodies were a lot higher a year ago. >1000
Now they are 109 a year later. Does that mean the more damage that's being done, the lower they go?
Sorry if thats a silly question. Still learning
greygoose in reply to
It doesn't mean anything at all. Antibodies fluctuate. Just because they were 109 in the last test, doesn't mean they couldn't go back to over a thousand in the next test. In fact, once you've had a positive result confirming Hash's, there's not much point in getting the tested again.
in reply to greygoose
Ah ok. I thought as more of the thyoid was being damaged the lower the antibodies
greygoose in reply to
Possibly, but not something you can actually quantify. Best not to try and use antibodies as any sort of guide.
SlowDragonAdministrator
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
healthcentral.com/article/t...
in reply to SlowDragon
Hi slowdragon
I have been gluten free for 2 months so far with no improvement. I am dreading the winter already. It was absolute hell last year. Windows open, fans on and cool baths. Yet still too warm. That's not normal surely
Gcart in reply to
I suffered the same way. So hot all the time . Winter temps made no difference, in fact it was worse then.
I am much better than that now
Just to add to the fact that it is like that for some .
in reply to Gcart
Hi there. I am the same. Actually hotter in winter too. So it's not to do with the weather. Winter was absolute hell. Cool baths, fans on and windows open yet still too warm.
I started out that way feeling hot all the time
in reply to Nissian2018
Hi thanks for the reply. Did it help when you started on medication? My levels are not high enough yet for medication.
Hi, yes I’ve always suffered from hot flushes, feeling hotter than I shoulder even in winter. I tend to wear summer clothes year round! I got diagnosed with hashimotos so I can go from hypo to hyper as the thyroid tries to balance itself ie to little thyroxine and then overcompensation bringing about varying symptoms. Something to check maybe? I do have to say though I have always felt this way with temperatures and heat so perhaps something conditioned in us? Have you always felt this resistant to heat even before your diagnosis?
in reply to Ellykiddd
Hi there. Sorry you suffered too. No. Last summer I was the opposite. Heated blankets and hot water bottles. Then it changed in winter to this awful heat. I don't have an official diagnosis of hashis. Just members on this forum advising i have it. It's hellish most days.
Ellykiddd in reply to
Well I hope you can find someone who can help you. It took years for me and several gps then and endocrinologist to find out I had hashimotos. The gps kept telling me my blood tests were normal (they weren’t) and because I had fluctuating results it was difficult to diagnose. Do get a few opinions if your symptoms are bad and you know something isn’t right. I had so many symptoms I knew it wasn’t right. Trust your instinct is my advice. After I pursued this against advice my very helpful endocrinologist put me on medication and I’ve felt better to this day. Good luck 
Sorry realise you say you haven’t had a diagnosis yet, hope you get some results soon good luck
in reply to Ellykiddd
Hi no diagnosis yet. Fed up going back and forward to the Dr's so will do my own private testing. Again in 3 months. It's tough to wait without help
Ask your gp to refer you to an endocrinologist if you haven't already been and you're right, this forum is a godsend. Good luck.
in reply to FarmerDJ
Hi i paid privately to see an endocrinologist but she insists no thyroid problems either. She never mentioned the antibodies were of any significance or could cause symptoms. My TSH is higher now than it was then. 2.67 the highest it's ever been. Maybe clutching at straws and it's not thyroid related? 🙄
TSH110 in reply to
Did you get one from the ThyroidUK list? If the TSH goes over the range (around 4.2 - depending on the lab) a decent doctor ought to allow a trial of Levothyroxine. In other countries you’d be treated when I was over 3 - it is rubbish here with this new 10 business, criminal in fact. I believe Raynauds is more common with hypothyroidism.
in reply to TSH110
Hi the one i saw was supposed to specialise in autoimmune endocrine diseases. That was the only one in my area. I guess i just have to struggle on until my levels go near 4.2 😢
Yes i have read that about raynuads but no one seems to make the connection. That's also gotten worse in the last 6 months.
TSH110 in reply to
Can you request a second opinion and then choose one from the thyroid uk list? I thought one was permitted to do that on the NHS. It might be worth travelling further a field to see a better Endo.
in reply to TSH110
I was considering that but with my current levels i fear they would say the same 😔
FarmerDJ in reply to
The elevated antibodies could be causing the sensitivity to heat as its part of the bodies defence system. We get hot when they are trying to do their job, fight infection. I'm not going to pretend I know what any of your results mean as I had no clue what my own meant either but as they are elevated then they must be attacking something. Coeliac or thyroid being the popular choice. I developed a goiter with nodules before they treated me with radioactive iodine and then levothyroxine so regular scans and blood tests as well as coeliac testing will keep a check on what is going on. I have graves disease and struggled with the heat all year round and it felt worse during the winter, snow on the ground but I slept with windows open.
in reply to FarmerDJ
Hi FarmerDJ
I am going to have my levels checked privately again in 3 months. To keep an eye on things. I had thought about graves too. I'm having the trab antibody test tomorrow. You sound exactly like me in winter. Windows open and fans on etc when it's -10. So it's nothing to do with outside temperature. Just my body going haywire. Yet trying to explain that to my Dr is difficult
FarmerDJ in reply to
Yes night sweats were particularly worse than during the day. Then to top it off the menopause came on adding fuel to the fire! Carbimazole helped to relieve the symptoms for me while the thyroid was being overactive.
in reply to FarmerDJ
Hi so sorry you suffered too. It's not the menopause with me. I'm 37 and my oestrogen levels were checked so it's not that. My Dr prescribed medication that's used for hot flushes. That made it worse so i stopped taking it. It's not a hot flush as it's constant now and has been for about 6 months.
FarmerDJ in reply to
I hope you can get it sorted soon, there is some amazing help here on this forum and a proper diagnosis is key and having a GP that understands your condition. X
in reply to FarmerDJ
Hi yes the forum is a god send. So many knowlegable and helpful people. I would be totally lost without it. My gp is ok but last time I spoke to her for help with this hear. She said it's not her area of expertise and hasn't come across it before 🙄
in reply to
Your symptoms sound like Grave's. I hope this test will be the answer for your problems.
High TPO can also be present in Grave's and Hashimoto's and Grave's can overlap.
healthcentral.com/article/g...
in reply to
Hi i thought it might be graves that's why i ordered the test. But i might still be no further forward if its positive as Dr's don't see antibodies of being of any importance. There lots of hypo people on here with similar heat problems so it could be either or i suppose.
medichecks.com/thyroid-func...
That's the test i ordered. Hope it's the right one
in reply to
I know what you mean, but high antibody levels AND symptoms must mean something! I hope you can find a sympathetic GP. If not, ask to be referred to a Rheumatologist.
in reply to
They should do but i don't think Dr's understand antibodies. Until my tsh rises a bit more, i don't think i will get any help
in reply to
Yes, that’s the right test.
A GP may not understand what raised antibodies mean, but a Rheumatologist certainly does.
Besides, with high TSH receptor stimulating antibodies, your TSH levels may not be low at the beginning of the disease.
in reply to
Hi i had that test done this morning. So glad it's the right one.
I may be thinking wrong but would it not be an endo i see about the antibodies and not a rheumatologist?
I have seen one about Lupus. He never mentioned the antibodies of being of any significance
in reply to
Great, how long until you have the results?
I guess an Endo would be the right choice for thyroid issues, but if you have other unrelated symptoms, like arthritis or lupus, a Rheumatologist is the right choice.
in reply to
It says 6 day turnaround. So maybe next Monday. I was referred to a rheumatologist for suspected Lupus but nothings came of that either yet
in reply to
Thanks. Yes, diagnosis is a long and winding road. Keep us posted.
in reply to
I'm realising that. I didn't know how long it was until now. And still a long way to go yet. Yes, i will keep you posted
I struggle with overheating too. The sweat drips down my face and my hair gets soaking wet. It's mainly these 2 areas that are affected. I have Hashi's and have an overactive bladder too. My GP has prescribed a tablet which does help.
in reply to Inishowen
Hi sorry you struggle too. Do you overheat in winter too? The only house in my street with windows wide open when it's -10 😭
Yes, throughout the year. I had a stroke 3 years ago, aged 49. I've made a great recovery but my feet never heat. My feet will be freezing but my upper body will be sweating 😏
in reply to Inishowen
So sorry to hear you had a stroke but glad you made a recovery. I have raynuads too so my hands and feet will be ice cold yet the rest of me feels like I am on fire.
Thanks. I wish doctors would listen to their patients more. It's awful what we have to go through to try and get the correct treatment. I hope you can get a diagnosis soon.
in reply to Inishowen
Thank you. I have no faith in Dr's anymore. Sometimes i feel like they don't believe you. I've had it all blamed on anxiety too. So i switched Dr's. I know it's not that.
Rather than go through all that hell whilst doctors and endos dither and spout clap trap leaving you suffering I’d be tempted to self medicate and see if it brings some relief. With this disorder sometimes you have to help yourself. I resorted to NDT and feel much improved.
It is interesting hypothyroidism can cause overheating (I always felt glacial) but I was very thin and had quite a few symptoms normally associated with hyperthyroidism as well as a shed load of hypo ones. I hope you are able to get improvements in due course.
in reply to TSH110
Hi i was considering that but wasn't sure how to go about self medicating. I seem to have a mixture of both hyper and hypo. I don't have weight gain. That's usually hyper, I have weight loss. And the cold normally associated with hypo, I have the heat 🙄
TSH110 in reply to
It is a bit of a hassle getting the medication but there are good guides on how to take it. I was terrified but went very cautiously and I am glad I did now. My situation was very different to yours, I was not diagnosed for decades because I was never tested despite suggesting I might have the disorder and it being dismissed. I was very poorly indeed once I finally pleaded with a doctor to do the thyroid function test - good job I did rather than take yet another prescription for antidepressants. I suppose I was fortunate in knowing a bit about hypothyrodism because it is in the family and suspecting I had it too, I knew what test was needed, otherwise I would have died of it. I only got medication in the nick of time as it was. I never felt properly better on levothyroxine and after almost 3 years on it with a decent dose I discovered there were other medications one could take, I decided to try NDT as I felt I had nothing to loose I felt so wretched. I am unlucky the rest of my family with hypothyroidism feel/felt fine on levothyroxine. If you can get it via a sympathetic GP it is better as you are not on your own, but this is becoming increasingly difficult with more and more ridiculous new guidelines set by misogynists who have never had the misfortune to suffer it themselves and are highly unlikely to, being men. Mind you two of the worst GP’s I have seen concerning it have been women. PM me if you want more info.
in reply to TSH110
Hi so sorry to hear how ill you were for so long. And never treated properly. I often think if the Dr's felt how we feel they would be more sympathetic but that's not going to happen. I'm so tired now of going back and forward to my Dr and being told 'everything's fine' 😢
TSH110 in reply to
I really feel for you it is exasperating and totally exhausting. I gave up with doctors in the end suffering all sorts of hideous tortures believing I was a hypochondriac! It is slow and insidious each more horrible development just seems normal. At least you won’t get stuck in that mindset and are lucky to be on this forum for support 😎 hope the cooling unit helps with the internal furnace. Although I said I was glacial I have always got hot flashes since my 40’s but these are done in a few seconds so I ignore them. They pretty much disappear in the summer and make more unpredictable appearances in the cooler months. I was told they were menopausal - why do I get them at 60 then, almost 10 years after my menopause ended? It has to be related to the hypothyroidism. I read it was the mitochondria in the cells going into overdrive due to thyroxine levels not being perfect (taking a daily tablet is not ideal or if the levels are incorrect due to under or lack of treatment) or vacillating between making too much and too little energy, but I am not sure if is this theory is still current. It still sounds the best possible explanation I have heard.
in reply to TSH110
Hi TAH110
It is so exhausting now.
Thr fatigue is horrible. Even out for an hour or so I get totally exhausted. A tiredness that i can't explain. Again I went to my Dr about this but there's nothing she can give me and said it's likely due to my underlying condition (I know that anyway) but yet no one can tell me what that is. I could probably deal with a hot flash as they don't last long. I feel other people don't understand, how you can be so warm in winter. I live with my son who had to get a heater for his room otherwise he would freeze to death.
TSH110 in reply to
Yes I’d feel so tired I felt like crying and often did, it is indescribably crushing and draining. greygoose said it is Hashimotos from the antibodies. There a small number who get both that and Graves concurrently. I think you said you are getting tested for those antibodies too so good you are on the case. I did wonder if I might have both but I don’t, just hypothyroidism. I have one close relative with hyperthyroidism, but hypo is the norm - literally, bar the men in the family.
in reply to TSH110
Hi
Yes. I have been advised by members on here that I have hashimoto's.
It's a shame we have to do our own research and pay for testing.
I am having the graves antibodies tested tomorrow....privately.
Although not sure yet if my Dr would accept private test results.
Apparently some do and some don't.
It's probably just a stab in the dark as I thought the heat was graves/hyper but now after putting this post up i've realised you can have the heat with hypo too. It's all so confusing 🙄
TSH110 in reply to
Yes it is not always straightforward on the symptom front if they are mixed and it is good to check the graves antibody situation. I am doing the Thriva test but it is extensive (you can’t just get a single antibody done as far as I am aware with them) because the NHS use them so if I were to get any I’m not accepting those results because they are private tests I would point out they are the same as the nhs ones so what’s the difference bar I had to pay directly for them in addition to my NI contributions.
in reply to TSH110
Nothing seems straightforward eh
I think the Dr's think that all hypos should be cold and all hypers be hot but that's not always the case. I've read from members on here that some Dr's don't accept private and insist on testing themselves
About ten years ago I found that my ferritin was very low. I tackled it but my intake was a bit spasmodic and I'm not sure whether it ever went into the normal range. Anyway, I have been taking iron this year very regularly and the over-heating seems slightly better along with my energy levels. It is early days, there is still room for improvement but the only thing I am doing differently is to take my iron every morning about an hour before anything milky. For years now I've been struggling with the heat so I can really empathise with you.
in reply to mstp
Hi mspt
It's awful isn't it.
I've only been like this for a year but it's getting really tough now. Sitting by a fan day and night to try and keep cool.
My ferratin level was 56.7 in may. So have been eating iron rich foods to try and improve it. Getting them checked tomorrow so will see if it's increased any. As advised on here it's to be 70 or above.
Years ago when it first started I bought an air conditioning unit for the bedroom and that has been worth its weight in gold. Much better than fans that only swirl the warm air around. It is big ugly and in the way most of the year but at this time of year it always earns its is earning its keep.
in reply to mstp
I have just ordered something like that. It's supposed to take in all the hot air and blow out cool air. If that makes sense. Not so bad in winter as you can go ouside for a cool down but in this warm weather going outside makes it worse.
Hi Can I be cheeky and ask if it is a Dyson you've ordered? If so, it is not as good as an air conditioning unit. I've had experience of both.
in reply to mstp
coopersofstortford.co.uk/hy...
That's the one i ordered
mstp in reply to
Hi Macey2002 Did your air conditioner arrive? I ordered one as a little extra after you told me about it and they say they can't find it in the stock room so there will be a delay in its arrival. The girl I spoke to didnt sound as if she cared much so I'm wondering if it will ever arrive.
in reply to mstp
Hi there. No mine hasn't arrived yet either. I hope yours does arrive but if not then they will need to refund your money.
This headline made me roar with laughter google.co.uk/amp/s/www.metr...
Hi Macey2002 hope you soon get your diagnosis and any required meds. I too am always warm I just say my thermostat is out if order and wear layered clothing which is more comfortable and as it is easily adjusted which helps greatly. Good luck
in reply to Seabird4
Hi thank you.
My thermostat is definitely broken.
Although last summer i was always frozen. Heated blankets and hot water bottles. Went to the Dr and her advice was wear more clothes and get a thicker duvet. Now it's the heat which is way worse. How i miss the days of being cold 😢
TSH110 in reply to
Well I never heard that advice before makes a change from a course of anti depressants! I used to go in to the surgery with so many layers I was like a Michelin man but thin underneath for sure my central heating control was on full all the time and I had two 13.5 Tog down duvets and up to 4 whippets in the bed with me - they must have got out to try and cool off a bit before diving back in with me - still freezing cold
in reply to TSH110
Never been offered anti depressants....yet. I used to go in with my hot water bottle in summer.
Then winter time when it was snowing. Wearing a vest and everyone else with their winter coats and gloves on.
TSH110 in reply to
I did have chronic depression, but since I took NDT I have never been depressed again so can only assume the root of it was hypothyroidism. Once they start Levothyroxine treatment it is common to be offered antidepressants rather than a sensible increase in thyroid hormone therapy, because the antidepressants are thought to boost the effect of Levothyroxine and doctors are obsessed with overdosing and TSH numbers, not symptoms and giving patients medications whose safety we are unsure of.
in reply to TSH110
I feel for you suffering from chronic depression. It's no wonder some people get depressed when we are left to duffer with no help from the Dr's. I'm not depressed yet but that may come in time 😔
TSH110 in reply to
I hope not - it is great you
are not depressed cos it is easier to act with a positive mental attitude
in reply to TSH110
I really don't know how i'm not. Before this started i was working full time doing a very physical job. Due to different ongoing symptoms i have now lost my job due to ill health.
TSH110 in reply to
Thats really tough re your job, but good depression has not visited you, it can be very debilitating indeed as a symptom of hypothyroidism. I had to give up my career and retrain in something a bit easier to handle with hypothyroidism but it has proved to be a wise move and given me a positive outcome.
I've hashimotos, I'm hypo from it 20 odd years now. I've no antibodies raised for Many many years now because my thyroid is totally burnt out. However my thermostat so to speak is faulty if my thyroid hormone isn't level. I used to wonder if it was too much Thyroid hormone causing sweats and I was over medicated but after many ft3 tests they were always very steady and in middle range. I had my female hormones tested in those earlier years when I'd be having boiling sweats and at the time they were normal also. So yes I believe my thermostat was faulty unregulated destroyed by hashimotos. Now I and in menopause I'm on hrt as I had terrible symptoms but hrt keeps me feeling great fortunately. It's all is alot to manage and balance isn't it and I'm no expert. Very difficult. Hormones, very sensitive.
in reply to
Hi Josie
I have been advised by members on here that i have hashimoto's. Although not officially diagnosed.
My hormone levels were tested and oestrogen levels so it's not the menopause.
It could well just be from the hashimoto's then?
I'm still new to all this and trying to learn
Yes, feeling hot can be a symptom. I have always felt hot, never cold. Having said that, winter drives me nuts as I crave cooling, yet when I get cool enough to stop feeling overheated, my bones and joints ache terribly. Since having a hysterectomy in Feb, my thyroid has been struggling with ups and downs. I'm in the middle of winter here and am having a high spike atm. I have only had a couple of times I wore a jumper in the mornings so far. I wear t-shirts and shorts, tossing and turning at night with overheating each night, and am aching and feeling so exhausted.
Even when my levels are better, I never feel cold. I was told by my GP that some people are just like that, as the thyroid is basically the body's thermostat control
I am hypothyroid and I am always cold. ... My daughter is hypothyroid and is always hot. ... So, an always hot hypothyroid person is unusual, but not unheard of.
in reply to Gingersnap202
Hi thanks for the reply. I assumed hypos were cold and hypers were hot but i'm learning that's not always the case. My friend has hypothyroidism and is always cold. Nothing seems straightforward 🙄
Before being diagnosed I was freezing but now that we started meds I seem to be hot all of the time and I'm having trouble handling the summer. We are still working on getting my numbers optimal and I thought I maybe done with Menopause so I guess I will see what happens once my numbers are optimal. Good luck and hopefully you start too feel better soon
in reply to HMBradley53
Hi i was like that last summer. Hot water bottles and heated blankets etc
Then since October last year it changed to the constant heat. I'm still trying to get a diagnosis and treatment
Yes without a doubt! I’m hypo and am always sweating buckets but I get cold extremities too.
It’s more often given as a hyper sign but absolutely hypo too. 👍
in reply to Hypothyro
Hi that's what often confusing as it always says hypo=cold and hyper=hot
I too have very cold extremeties yet the rest of me feels like i'm on fire
TSH110 in reply to
They are just generalisations and probably what the majority of people with the disorder feel, but not all of us. A recent study showed it was slowed reflex reaction that most closely indicated hypothyroidism of all the most commonly accepted symptoms . Only one doctor I saw did the hammer on the knee stuff to check it I think when it was unclear if I was hyper or hypo thyroid (first blood test showed overactive results I told doc they must have mixed up my blood test with someone else! The next one was definitive for hypothyroidism) I doubt any GP tests reflex reaction as a helpful indicator of the disorder they seem to dismiss symptoms as something else or know nothing about them at all. I wonder how many on the forum with the disorder or suspected of having the disorder have ever had reflex speed tested. It would make an interesting poll but only administrators can set those up
in reply to TSH110
That is interesting. No i've never had my reflexes tested. I think the best option is to monitor the levels myself and get advice on here. As i say, i have lost faith in Dr's now.
TSH110 in reply to
There are good doctors out there, so don’t totally give up hope. The one I mentioned who tried to give me antidepressants turned out to be fantastic once I explained things a bit better to him than just sitting there telling him I was hypothyroid with terrible depression and demanding a thyroid test! He immediately set about getting my thyroid tested and really looked after me from there on in. I would have died without his help. I hope you find one who is properly clued in 😊
Hi Macey2002, excuse me if you have already said this... do you have any other symptoms?
in reply to
Hi yes. Extreme fatigue and exhaustion and lack of energy (made worse from physical exercise ) joint and muscle pain, overactive bladder (not sure if related ) feeling generally run down and unwell on a daily basis. Extremely dry and brittle hair that breaks easily (that affects my self esteem also )
Extremely cold extremeties (raynuads)
Weight loss despite increased appetite
in reply to
Thanks! All those symptoms can be thyroid related, BUT they also are very common in estradiol imbalances and fibromyalgia, and I think (imho) those conditions are all related. I know you're still young (yay) and have 'normal' estradiol levels, but one blood test is not enough to tell a story. Estradiol and progesterone (and probably testosterone) have huge influence on thyroid function. You could have your sex hormones tested again to be sure they are not the culprit.
in reply to
Thank you. I am reluctant to go back to my gp. I'm sure she must be sick of the sight of me by now 😂 I was never out the Dr's for one thing or another.
She insists there's no thyroid problems or menopause but also can't explain my symptoms either.
in reply to
That's what GP's are for. You have to be insistent. Hormonal imbalances are very common, and they explain why most autoimmune diseases are more prevalent in women. Even men with oestrogen and testosterone imbalances are experiencing other health issues.
I had hormonal storms in my late 30's and it happened to be the beginning of perimenopause. That doesn't mean you are near menopause. My menopause only happened at 51! I had many blood tests (private health insurance) and they showed massive fluctuations. I was lucky to have a very knowledgeable Gynae who is actually a PhD and owns a hospital. The blood tests results don't lie.
in reply to
I know but sometimes it's like they don't believe you. I could get them done privately i suppose. My Dr prescribed medication to try and help with the heat (primarily used to treat menopausal flushes)
It made the heat worse so stopped taking it. It's not hot flushes I have. It's just constant heat
in reply to
I know what you mean, but they are not payed to believe their patients, they have to investigate.
What medication was prescribed, if you don't mind me asking? There are no medication that treats hot flushes, except for estradiol... some anti-depressants are prescribed but most women who really suffer at menopause, don't find them useful.
I have hot flushes, but when perimenopause began I didn't have them. It was more like a change in thermostat threshold.
in reply to
It was clonidine she prescribed. It was recommended by a dermatologist strangely enough. Who i saw for skin rashes.
I was also being investigated for lupus too but nothings came of that either yet. I am waiting on a skin biopsy
in reply to
Thanks. How long have you taken it? Maybe weight loss was a side effect?
in reply to
No. The weight loss started last year. I was only prescibed it in march this year. So it's not connected to that.
I took it for about 3 weeks but it made the heat problem even worse.
in reply to
These type of meds usually take longer to have any good effect and not so long to cause bad effects!
So... I would investigate your weight loss. If hormone related (whether thyroid and/or ovarian) I guess you deserve an explanation.
in reply to
Maybe yes but i couldn't deal with the extra heat while taking them. It's tough enough to deal with as it is.
There's got to be an imbalance somewhere surely.
I think i will just need to do my own investigating 🙄
in reply to
I know what you mean, I can't tolerate most meds because the bad side effects are overwhelming.
I have burning skin sensation, called peripheral neuropathy by some docs, and dysesthesia by others. It's like sunburn. It's very distressing and debilitating. Rheumy thinks it's fibromyalgia, but Neurologist thinks is Chronic Pain Syndrome, due to a lifetime of migraines.
ling in reply to
Your burning skin sensation, does it come from heat in your body up to the skin causing the skin to burn?
Is it all over or just some specific areas?
Is your skin wrinkled from the burning?
Thank you
in reply to ling
Hi ling,
I don’t know where it comes from. It comes out of the blue mainly on my hands, arms, feet, lower legs and sometimes upper back. It’s like severe sunburn. It’s nothing like menopausal hot flushes.
I used to feel this just on my feet at the beginning of perimenopause. I couldn’t stand the sheets over my feet at night. Before that, my feet were always freezing.
On 12 February 2018 I had this weird episode on my hands and feet. They suddenly became heavy and week, I had to rush home and go straight to bed, after that the burning started.
Now it gets worse in hot days and when I’m cooking, but it can happen any time really. It’s very debilitating. It’s not linked to anxiety or depression, although I do have both.
No redness or wrinkles on skin, but sometimes it looks blotched.
ling in reply to
Thank you very much chinchi, for your reply : )
Ladybex in reply to
I have exactly the same Macey20 ... I get hot a lot and wake up in the night burning up... am being treated with Levo 25mcg and just had blood test to see if I need an increase but apparently flymalgia has similar symptoms to under active thyroid ? I do sympathise with you and like you hope it gets sorted soon 😊
in reply to Ladybex
Hi thanks for the reply.
Sorry you had the same problem.
No one has ever mentioned fibromyalgia to me.
Were you like that in winter too?
It was hellish for me last winter.
-10 and had to have cool baths, fans on and windows wide open. Yet still couldn't sleep for being far too warm. Unfortunately my levels aren't high enough for treatment yet 😢
Ladybex in reply to
Yep been like it 18 months now, never like it before that... just can’t cool down and really bad at night ... waiting to see a Rheumatologist and UC hospital re fibromyalgia...
in reply to Ladybex
I really do sympathise with you. It's hellish day and night. I've been like this for a year now. Before that i was always frozen. Oh how i miss those days. Much easier to try and warm up than it is to try and cool down. I saw a rheumatologist for suspected Lupus but nothings came of that so far.
Ladybex in reply to
Me too always felt the cold but prefer it like you do ... well I’m confused... will see what Rheumatologist has to say 🤔
in reply to Ladybex
Hopefully the rheumatologist will be helpful. At least in winter we can go outside for a cool down but during summer i'm indoors with the fan on trying to keep cool.
in reply to Ladybex
Did it take a while for being diagnosed? My tsh is 2.67 the highest it's ever been so hoping it's slowing climbing so I can get treatment.
Ladybex in reply to
Took 18 months ... first they said I was borderline and gave me Levo that made me worse.. then they said try a different brand ... well I’m into 6 weeks waiting on blood test and maybe increase of dosage.. will update when I know 😊
in reply to Ladybex
That's a long time to be suffering. Did you have symptoms before a change in your levels? It's tough when your bloods don't show yet you have symptoms
Ladybex in reply to
Awful symptoms but doctor sent me to Endo who said I didn’t have an under active thyroid and to see Rheumatologist. Then my GP said I did need to see an Endo and still waiting for appointment ... I’m like a yo-yo atm 🙄
Hence confused
Some believe they are the same thing because the increase in Fybro etc occurred as synthetic T4 (Levothyroxine) and TSH blood tests superseded NDT and treating by symptoms only. Most people needed about 2 - 3 grains using this method but with dosing by TSH not symptoms, some never got treatment that would have with NDT and were accorded different ‘new’ illnesses eg ME fibromyalgia etc. The average doses of Levothyroxine are effectively lower than what NDT gave, with the added problem of having to make the missing T3 the thyroid provides on top of the T4 from just one hormone where NDT gave both. Many patients switched to Levothyroxine complained of feeling unwell again compared to NDT but it was smeared as being unreliable (untrue) and now you get Levothyroxine or you get nothing and if your feel unwell you are accused of not taking it correctly 🙄 or of having suddenly developed a mental health condition requiring antidepressants. There are a significant number of people who continue to feel unwell on Levothyroxine - we can’t all be imagining it. Not everyone agrees with this opinion of the new diseases being a particular cluster of hypothyroid symptoms but is does seem a remarkable coincidence and that thyroid hormone treatment appears to alleviate these newer illnesses.
25mcg is just a starter dose you will need an increase in 25mcg increments every 6 weeks until you feel properly well to get proper lasting benefit. Make sure you say you feel much improved but it still could be much better to ensure you get it upped.
in reply to
Weight loss is a problem. I don't think it's normal in hypothyroidism. It's probably more common in hyper, but I'm not an expert on thyroid. I think your GP has a duty to investigate further, weight loss can be a symptom of metabolism imbalances, malabsorption, and more serious issues.
in reply to
My gp knows this too. But isn't really concerned about it. I was 8.5 not long ago. I was always a healthy weight of 9.7 before. Despite not getting much exercise now, i just can't put weight on. Even when i eat more. I know from this forum that hypo can also cause weight loss. Which is why it's so confusing when symptoms overlap
in reply to
I guess it's all down to imbalances. If your thyroid is overactive your metabolism will, generally, be increased and you will lose weight. If it's underactive you will, generally, have a slow metabolism and will gain weight. Of course things are not straightforward and hormones can fluctuate wildly, so you can show paradoxical symptoms. I would insist on a historical blood test panel of both thyroid and sex hormones.
TSH110 in reply to
Not normal but not unheard of. I agree they should be looking for things like lymphoma which can cause weight loss and night sweats (but not constantly feeling hot as far as I am aware - it’s another family favourite, one I have escaped so far) from comprehensive blood panels
TSH110 in reply to
Overactive bladder is related - it plays havoc with the waterworks!
in reply to TSH110
Yes. I always thought that too but the Dr's can't make the connection with that. I am seeing a urologist privately next month. So they might have an idea of what's going on.....Hopefully
TSH110 in reply to
The docs are wrong there is a connection see the academic paper below. Frequency is more common with hyper but given your hyper symptom cluster it must be another variation to the norm.
ncbi.nlm.nih.gov/pmc/articl...
Here’s hoping the urologists know such things
in reply to TSH110
I had read it's more common with hyper but also there's people on the forum with hypo and bladder problems. I'm hoping she will be more helpful
Thanks for that. My bladder keeps me awake early morning like I really wabt to go..but when I get up and go it takes a lot of concentration to get it going and akthough I feel 'busting' I don't pass that much urine. A few years ago I had a urodynamic test and I remember he saud you don't have any post voiding residue in your bladder but remarked how slow I passed urine!
in reply to Jennyw59
Hi Jenny
Did you find any help for your bladder issues?
I am seeing a urologist privately as the medication the dr gave me doesn't help that much.
It does make your life quite restrictive
Jennyw59 in reply to
Tbh i've never discussed it with the GP I put it down to the codeine although it seems a little better now i'm on Levo for Hashis. I'm hoping once I get on top of symptoms with increased dose that might go! I don't want to take anymore tablets!
in reply to Jennyw59
I'm glad your levo has helped a bit. I often wonder if i was prescribed levo then many of my symptoms would ease too. Unfortunately that's not going to happen anytime soon 😔
Jennyw59 in reply to
Certainly has helped to some degree along with early retirement! I got it from a sympathetic GP when TSH was only 6 ( TPO positive) but I couldn't put one foot in front of the other & brain fog symptom wise. Another GP I saw after said hmmp well I wouldnt have prescribed it until your TSH was 10! I don't know what these arbitary figures are but they don't seem to correlate with most peoples symptoms! Someone needs to rewrite the guidebook!
in reply to Jennyw59
I agree. It doesn't seem fair if people have symptoms yet they need to wait till your tsh is over 10. I read on here if it's over range with positive antibodies then some GP'S will prescribe levo.
LuluCops in reply to
Have you thought about having your cortisol tested!? Like I’ve said I’m hypo but I was losing weight quite rapidly and it turned out I had an adrenal insufficiency and this was causing me to lose weight, it can also be a reason for our thermostats to be out too!!
Ask your GP for a morning cortisol test, needs to be done before 10.30am (ideally the earlier the better) and fasting before hand is best. If you do your own private one then doing the test between 6-8am is better. (I have Addisons Disease, I’m used to these blood tests now!)
If your cortisol is below 450nmol/L then you probably have an adrenal insufficiency. There’s no such thing as adrenal ‘fatigue’, it’s either your adrenals that stop working (primary AI) or its a problem with your pituitary gland or HPA axis (secondary AI).
If you need any more help or info re this, you’re more than welcome to PM me, it’s not nice to deal with, especially on top of everything else!
Apologies if this has already been broached but I have cognitive issues and I’ve probably read past it or missed it completely.
Good luck xx
in reply to LuluCops
Hi there. I had a 9am cortisol test not too long ago. The beginning of last month. It came back normal. Not sure of the actual ranges. Just that they were in range. I had the graves antibodies tested privately so still waiting to get those results back. I'm more convinced now it's all just the hashi's and hypo (only my levels haven't risen enough yet) Or i could be completely wrong!!@!
I have profuse sweating which is quite embarrassing as it runs off me! I also have Lymphoma which causes sweats and other serious health issues, so never sure which is causing it the most!
Omg yes all the time and have so for little over a year.. I've developed anxiety due to it. I also get excessive sweating also from time to time to the point I can't leave home as I'm dripping from head to toe. I have a mix of hypo and hyper symptoms and 4 months ago found out I have Hashimotos disease.
in reply to MjM2015
Hi there.
You sound exactly like me.
Winter was worse than summer for being too hot. It was hellish. Cool baths and fans on yet still couldn't cool down.
I don't have a diagnosis yet but feels like a mixture or both too. I have hashimoto's according to the experts on here but not officially diagnosed with it. It's tough to live with eh
Hi I also have been like this for about two years,with no help .had bloods done that did not give a answer,join the club if you get any help can you let me know julie.
in reply to babyowen3
Hi there.
So sorry you are suffering too.
I wish I had an answer for you
Have you had a full thyroid test?
I've been testing privately as recommended on here.
It's tough when you don't have any answers
Yes I also suffer from this, I’m never cold as part of the hypothyroidism symptoms.
in reply to Ness54
It's horrible isn't it. Did you not find any relief with medication?
Ness54 in reply to
The only thing is I have been following a diet for thyroid disorders, which involves only eating certain foods for life. I have lost two and a half stone and I have found that I am not sweating no where near as much. Changing my medication did not help these embarrassing sweats. 😅
in reply to Ness54
Is that cutting out gluten and dairy? Aw i'm maybe being too optimistic then. Thinking when i do get medication then that will fix the problem. As i said it's even worse in the winter 😢
Ness54 in reply to
It’s online just put in foods to avoid if hypothyroid. I mainly just eat fish, seafood, seaweed for Iodine. Eggs, non cruciferous veg. Milk, yogurts.
in reply to Ness54
Thanks. I will have a look. I have suspected thyroid problems for a while but unfortunately not showing yet in my bloods. Did it take you a while to get diagnosed?
Ness54 in reply to
Macey I’ve had it that many years I can’t even remember. All I remember is how ill I was on Levothyroxine and I had to buy Armour from abroad, which cost me a fortune as well as paying import duties on it as well. I changed my gp practice and got a good gp who listened he sent me for a endo appointment. She was a bitch and useless I ended up walking out. She did not approve of NDT so without her backing my gp could not prescribe Armour for me. So I continued to buy from abroad and eventually asked gp to get me another endo appointment but with a different one, he did and this endo was a man and he approved of NDT so my gp got it on prescription for me. I’m so lucky, but at first my weight was not an issue then some years ago the weight plonked on, but with this diet I am controlling it now. I have a book called The Thyroid diet, written by an American lady called Mary J. Shomon.
in reply to Ness54
Hi so sorry you had to suffer like that for so long.
I've had this heat problem for over a year now. It's hellish and not sure how much.longer I can deal with it 😢 I paid to see a private endocrinologist who insists there's no thyroid problems. Back and forward to my gp with no success. Just so tired now of not getting any help and being told 'everything is fine' 😔
TSH110 in reply to
Thyroid uk don’t recommend seaweed if you have autoimmune thyroiditis because of the high iodine content which can make things worse. A paper was posted recently on this, it might have been posted by helvella
in reply to TSH110
Hi i don't eat seaweed.
It may seem a silly question but can you have autoimmune thyroid disease with normal thyroid function? I ask because the Dr's have never picked up on the antibodies.
TSH110 in reply to
Good it was just that Ness54 suggested it as part of the diet that has helped her with similar symptoms. There seems to some evidence that in some individuals blood tests appear normal but they have symptoms of hypothyroidism and improve if put on thyroid hormones, there is a monster paper that might explain why but it was quite hard going quite technical although the points made are very good. I will pop a link to it directly.
Here it is - not for the faint hearted!:
pdfs.semanticscholar.org/b2...
in reply to TSH110
Hi thank you.
I think i have read something like that.
It's all so complicated this thyroid business eh!!!
Ok what ever, I am now going to leave this group as I find your comments so conflicting. Everyone of you has a different opinion, when people actually need advice and help and end up with so many different opinions it so confusing. So bye and thanks for all your unhelpful useless conflicting comments.
That is because our bodies and hormones are all different. That is highlighted by the ranges of results that are considered normal. What works for one does not always work for someone else. All people are doing are sharing what happened for them or what they have learned. I think it would be hard to find such a wealth of knowledge anywhere else.
in reply to Lalatoot
Hi Lalatoot
I agree with everything you just said. There is such a wealth of knowledge on here. This forum really is a god send for me 😊
Lalatoot in reply to
A definite godsend. Without it I would never have realised that I felt awful because my levels might be in range but the were not optimal for me.
in reply to Lalatoot
I hope you're feeling a bit better now. I knew nothing about hashi's or that i even had it until finding this forum.
Lalatoot in reply to
Unfortunately I am bad at the mo. Only able to do minimum. I am starting the discussion re t3 with the gp so he can push for an earlier endo appt though I am not holding my breath. I want to fight my way through the system here in Scotland to see if I can get it knowing that with the support on here I can buy my own if that fails.
in reply to Lalatoot
Sorry you're not well. I too have been struggling for a while.
I live in Scotland too so if you could recommend a good endo. P.M me.
Unfortunately though i don't think they would treat me until my levels rise more
Lalatoot in reply to
Sorry you are struggling too. I believe there is a recommended end in Edinburgh. I am on the Moray Firth. I want to try to fix things with the NHS up here because I think I should give it a go and hope it helps other folks
in reply to Lalatoot
Hi. I live near Edinburgh. I know you can't mention names on here but if you know the name could you private message me
Thanks
Did you see helvella’s post about iodine and hashimotos? I always understood seaweed was best avoided if you have autoimmune thyroiditis:
healthunlocked.com/thyroidu...
in reply to TSH110
Thanks.
Just read that now. I've never eaten seaweed in my life anyway.
Also how is it that Dr's diagnose autoimmune thyroid disease?
As members on here say it's the raised tpo and tg antibodies.
Both mine are raised but the Dr's never comment
TSH110 in reply to
Most just use TSH 😱 over 5 they might give you a trial of Levothyroxine over 10 they always gave you Levothyroxine but now they might or might not, over 20 they will give you Levothyroxine bit if yours okd only a tiny dose and then say if you don’t feel improvements it is not working and discontinue it when it is so low it is not enough to do anything. I’m my case one week my TSH was zero and the next 110 so they could not dismiss that number! Most people start feeling ill when the TSH goes over 2. -2.5 I think c 1.5 is the average in healthy people but most people cluster below this as the distribution is skewed towards the lower values no graphs or health people show TSH of 6 let alone 10 or 20 TSH stuff is absurd for diagnosis or treatment
in reply to TSH110
A TSH of 110 😱 You must have felt really ill. If only they were in our shoes then maybe they would be more helpful. Oh well. I guess i'l have a while to go yet befure it gets near 5 😔
TSH110 in reply to
I was dire - hallucinating, thinking people were following me, up all night feeling totally crazy and only able to sleep after 6am! So cold I thought I was going to freeze to death with hypothermia, one minute I’d be shouting and yelling then crying and bawling my eyes out then I’d think that was a bit weird but never really realised how abnormal it was, I was so ill I could not reflect on anything for more than a nano second just doing the most basic things took all my energy, my mind was just flitting from second to second and I could not remember things. Getting to work was like undertaking an assault on the north face of the Eiger. It was really weird - everything had got completely out of synch and that was the result - complete chaos. Thyroid hormones are like the conductor of a huge orchestra my symphony was a cacophony! Mind you I read of someone with a TSH of over 300 I didn’t think that could be compatible with life, certainly not in my case it could not have got any worse
I longed to die to escape from the hell of it. Imagine! It has given insight into the condition at its latter stages which is unusual and interesting but not recommended. It must have been a truly horrible way to die before there was any treatment.
Have you read you medical records yet? I am reading mine and the GPs were making comments like I am delusional when infact I was ill with Graves' which they couldn't diagnose. I am livid and need to do something about it ... I don't know what yet.
I have never asked for my notes they are always very kind to me so I wonder if there is something in them I presume sort of positive but i’d Need to see them. I guess it is a more embarrassing record for them that you. I am not up on medical negligence stuff but you might have a case. I feel none of my problems were caused by wilful or spiteful neglect on the part of those I saw - just barking up the wrong tree as they all tried to help me but were stumbling around in the wrong forest so to speak
Well if your Doctor takes a dislike to you which can happen as they are only human after all. They can make remarks in your notes which are not helpful especially if it is to do with mental health.
Oh I quite agree there are some nasty ones out there who should not be doctors who spout rubbish and put really awful things on medical notes. They are unprofessional, hiding their incompetence behind a cloak of secrecy which can now be pulled away thanks to freedom of information. I might get some nasty shocks if I read mine I am sure. I have read some dreadful stories on this forum people even given electric shock therapy and diagnosed schizophrenic when it was hypothyroidism all along - unforgivable, plus it speaks volumes of stereotyping of women as hysterical etc, instead of investigating the possibility of a very common condition known to mainly afflicted women, before coming up with such diagnoses. I have had two unpleasant near useless doctors since being diagnosed I dumped them fast as a danger to my health. I think you brave to go through your records and face up to what was written in them perhaps I am not strong enough to deal with any horrible stuff like that.
in reply to TSH110
OMG! How awful for you. I can relate to some of those things. I too thought I had hypothermia. Gas fire on, hot water bottle and heated blanket yet still shivering with the cold. That's when the dr said to wear more clothes and get a thicker duvet. This was in the middle of summer too. Now though I would happily swap for this heat
TSH110 in reply to
I found the whippets were the most effective warmers! What a crazy doctor! And missing whippets off her list is unforgivable 🤣😂🤣
in reply to TSH110
Sorry but what are whippets?
TSH110 in reply to
They are small streamlined dogs once used for hunting and racing of English origin. They are similar to a greyhound but much more petite and a breed in their own right. They are very affectionate and in the olden days, particularly in the north of England they were permitted to sleep in the bed as a kind of hot water bottle! In fact, it is very difficult to keep them from getting under the covers for a snooze and a cuddle. Mine were very kind when I was seriously ill - they would even try and warm my feet! They're not everyone’s cup of tea, but perfect for me.
Whippets are wonderful
Couldn’t agree more I have had a quite a few now I even have a little cry every so often over the ones that have died I loved em so much each with their own little foibles and character! Lovely
I miss mine dearly. Such beautiful souls. I'm glad yours have been a comfort to you during all you'be been through!
Sadly the ones that looked after me are all gone now but I have a close descendant of one of them, whom I adore! I am sorry you don’t have whippets now their souls stay with you forever 😇
in reply to TSH110
Ah oops! Sorry. I thought you were taking about a medical term. I have dogs too and they were always good to cuddle in for a heat
TSH110 in reply to
Ha ha my medical condition is “Whippet mania” for which there is no cure - some relief can be obtained by owning one, but it is addictive in nature and one seldom stops at just one whippet 🤣😂🤣
in reply to TSH110
😂 Glad you found some relief with whippets.
I got my vitamin results back today. Disappointed and confused. Been trying really hard to raise my ferratin levels. By eating lots of iron rich foods. Now my levels have gone down. Don't understand it 🤔
TSH110 in reply to
Put the results on a new post for comments. SeasideSusie is superb on all matters pertaining to vitamins and minerals and gives amazing advice, plus she knows a thing or two about all sorts of thyroid matters
in reply to TSH110
Hi i have already done that. I wrote a new post yesterday.
TSH110 in reply to
I love the stuff but last time I ate it (beautiful jewel like samphire) it did not agree with me. I used to find salt unbearable pre diagnosis but suddenly I started to crave it again on meds. It could be something to do with the iodine content.
I am diagnosed hypo and I used to be freezing all the time, the last 2 years or so I have gone completely the other way and I’m now ALWAYS hot! I always joke and say my thermostat is broken too as that is what it feels like!! I struggle to do anything without breaking out in a complete river of sweat! I’m always in shorts and T-shirt’s, only ever wear a light coat when it rains (I hate coats and jumpers otherwise!) even though my favourite thing about winter was getting to buy a new coat and bag! I have a wardrobe full of hoodies, coats, gilets etc that I now don’t/ can’t wear because I’m never cold enough! I went to NY for my honeymoon in Nov 2017 and I had so many people ask me if I was cold because I was walking around in short sleeves!! 😂
I’ve just found out that I have raised TG antibodies, so I guess that means I’ve probably got Hashimotos too then?? xx
I'm exactly the same. Broken thermostat and hate extremes of temperature. Too hot in summer and huge heating bills in winter.
Prefer being cold because at least you can do something about it and have some control. I have a cool room with curtains closed, windows open and rather than follow the sun move from one room to another to escape it. Used a small cool air blower last year; not that effective. Love supermarkets due to air con.
Bright red in the face and overheated when other people look cool. Wiping sweat as well as water off by the time I get out of a cool shower. Before diagnosis I hated heat though and avoided in season summer holidays abroad as would just stay with the air con. Coped better with minus 10 sightseeing in Prague again before diagnosis.
Post diagnosis find it harder to warm up if cold AND harder to cool down. Would sit in front of a hot radiator for at least an hour if cold and shiver.
I'm definitely underactive plus a long way past menopause. So wonder if its something else?
in reply to lilliput
Hi there. Sorry you're suffering too. It's awful isn't it. My thermostat has been broken for years. I haven't been diagnosed yet as my levels aren't high enough. Winter was hellish for being so hot all the time. Cool baths, fans on and windows open yet still too warm. Today is the first time in about 6 months that i've not needed a fan on all day. Feel quite cold yet it's a warm day. It's so much easier to keep warm than to cool down.
I'm not at the menopause yet so wondering of its just the hashi's/hypo that's causing it?
Sounds stupid but I seriously wonder if its genes /conditioning. Perhaps related to an Eskimo? lol I lived in a small bungalow as a child/ teenager; no central heating, windows with ice on the inside. No heating at all in bedrooms. Open fire in front room and an electric bar heater in kitchen.
Used hot water bottles and wore jumpers. Kind of got used to it. So used to the old English, no extremes, weather. I think the weather is very different now. Plus we are used to living in a regulated temperature.
Wonder if our own thermostats are set and if not using them can cause them not to work.
in reply to lilliput
I never used to be this way so don't think it's in the genes. It was only a few years ago i felt the cold a lot more. Hot water bottles and heated blankets in summer. Then winter with fans on full blast. So something must be going on to cause it 🤔
I think i need a house like yours or go and live with the Eskimos 😂
So the people you live with must feel temperature differently. I live alone so have control over that central heating thermostat/ open window.
in reply to lilliput
Yeah. They're not like me. I live with my son so winter wasn't very good for him. I couldn't have the heating on and windows were open when it was -10
I had to get him an electric heater for his bedroom so he wouldn't freeze.
I often have similar perception of temperature when with friends. The difference is the recovery time . I run on hot if anything.
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