Temperature veering from 32-35 degrees

[AWDF]

Hi, I'm the mum of a 27 year old female who has been having various symptoms including exhaustion and aching all over. CFS is now being considered, as nothing else has shown up. Her temperature keeps dropping to 32 degrees. Does anyone else experience that and if so, is there anything anyone has found useful to do, other than wrapping up warm, eating something sugary, warm drinks etc.?

[Alibobs]

Hiya so sorry to hear your daughter is suffering. I’m 33 years old and was diagnosed with m.e at 27. I feel for your daughter and yourself over this horrid illness. It’s really hard and as it’s a multi system illness anywhere in the body is effected. The temperature thing is a pain. It’s to do with the hypothalamus gland in the brain which regulates temperature. My m.e team described it to me as if it’s gone faulty. I too suffer from low temperatures constantly. We have been experiencing a little heatwave recently and I’m still in my socks and pjs for bed along with a hot water bottle. I constantly keep it hot day and night as it helps me to feel warmer but I do suffer from high temperatures sometimes. The only way I can describe it is if you had a virus your temp might go to 38 but mine goes up to 36.4 which in effect is your 38 xx

Hope your daughter gets the help and support she deserves from the nhs and specialists in the nhs. Keep me updated and tell her to rest and pace herself. Look up the spoon theory online and apply it to everything she does on a daily basis as she wants to try and not go into energy debt. Xx

Take care and let me know how she gets on xx

Alison XX

[klr31]

Has your daughter had her thyroid tested - TSH, T4, and T3? Low temperature is a common symptom of an underactive thyroid. She might have Hashimoto's which is an autoimmune condition so will need her antibodies testing. She may feel better once she gets on an adequate dose of thyroxine if that is the case. M.E symptoms and symptoms of Hypothyroidism are very similar. If she's had the tests, she needs to get her results - to which she is entitled - with reference ranges to check that they are 'normal' as doctors' interpretations can sometimes be inadequate.

Karen

[AWDF in reply to klr31]

Hi Karen

Thanks for your kind response and suggestion. My daughter has had her bloods checked and had a marginally high TSH at 4.47, and her T4 was 10.9 which is described as normal (a previous blood test was 'low normal' so it might have gone up slightly). I don't know if they have considered Hashimoto's, but she can certainly ask her GP at her next appointment - thank you for the suggestion. The only other thing that showed up in the blood tests was a low white blood cell count.

She has been tested for diabetes, Lyme disease and Mononucleosis, HIV which were all negative. Shes had a CT scan and a blood culture all of which showed nothing at all. The glands in her neck and collarbone, and underarm areas are 'up', but there's no sign of infection in her blood. The doctors are unable to give a diagnosis at this stage, but, as I replied to Alison above, CFS/ME has been mentioned as a possibility.

Thank you very much for taking the time to suggest Hashimoto's. I'm absolutely in the dark about all this, so anything and everything is helpful.

Kind regards

Angela

[klr31 in reply to AWDF]

She is borderline so that points to the fact that she will probably need thyroxine. It can be a battle getting doctors to agree especially when results are just in range. In my opinion on her results she does need to start on a low dose. If you have a look at the thyroid site on Health Unlocked you will see that there are lots of people in a similar position to your daughter.

Good luck.

Karen

[AWDF in reply to klr31]

Thank you.

[AWDF in reply to klr31]

Hi Karen, My daughter's temperature fell to 32 degrees on Thursday night. She rang 111 and they made an appointment for her at St George's London. By the time she'd got to the hospital, her temperature had risen to 39. The doctor didn't believe her temperature had been that low (despite her having taken photos of the digital readings, and despite her telling him she had taken her temperature on 2 digital and one mercury themometer). He said "If your temperature was ever that low, you'd be dead."

This frightened the life out of me, so I spent the whole of Thursday night/Friday morning researching. I took your advice regarding thyroid. I looked on Thyroid UK and their checklist of symptoms matched so much of what my daughter has been suffering. The next morning I had a script for her, based on the Thyroid UK symptoms, to try to convince her doctor to put her on Levothyroxine. At first he said he couldn't prescribe it but would be willing to send her for thyroid tests. A few minutes later he rang back and said that looking at her symptoms over the last 2 years, he thought she was on to something. He's started on her 50mcg Levothyroxine.

In the meantime I ordered a full Thyroid bloods screen from Blue Horizons labs, because the GP said he could only order one test at a time, and the possibility of having each new test was dependent on the result of the previous one. I have also ordered a adrenal stress saliva test. All these results will be back in about 3 - 4 weeks. I don't really know what I'm doing, but it's a start.

Thank you again for suggesting another possibility.

[klr31 in reply to AWDF]

Brilliant! Well done for holding your own with the doctor. Be aware that if your daughter is starting thyroxine it may affect her symptoms and time is needed for things to settle down. I would be interested to know how you get on.

Karen

[AWDF in reply to klr31]

Thanks for the warning. I will let you know.

Kind regards

Angela

[Jts1]

Hi, am def not an expert but agree could be thyroid related. Even if thyroid panels look normal sometimes there is conversion problem or it’s not getting into the cells properly. There is debate whether it’s real or not but maybe check out something called Wilson’s temperature syndrome. Vitamin d should be optimal too. Don’t think sugary drinks ideal. Might be autoimmune issues in which case cutting out gluten dairy could help. Could be virus in which case want to boost immune system. Def check all with doctors first but personally I have found Ayurvedic herbs help with energy and heat like ashwagandha and guggul. Good luck! As someone who got hypothyroid at 21 I feel for your daughter! But don’t give up.

[Mary76mary76]

Home made bone broth.....so easy to make, and good pink hymalayian salt are just some things that helped me when I had very low temp and low blood pressure, lots of duvets and hot water bottles. Good wishes , it's very hard! Dr Wilson is interesting reading.