Feel so cold

[gill99]

Hi,can anybody advise please i had my thyroid removed 2 yrs ago have struggled with dosage at present i am on 150mg/175mg alternate days.I feel so cold and have been taking my temprature each morning and it ranges lowest 34.6 highest 35.8 my question is should i tell my gp as i so cold my hands and feet are so cold .I have also taken it in the evening and the highest it is 36.01 is it something I just have to put up with ?...hope somebody can advise many thanks Gill

[Jackie]

I would make sur that Free T3 had also been tested along with TSH and T4, that would give a much better picture. it is my understanding that post Op thyroid often needs treatment and it should be ignored that one has had the surgery and treat on the present. make sure you have also had your vit D ( hormonal ) tested. if below range , then calcium test before treatment. Calcium must always be in range. Have you had Ferritin , B12 and Folic acid checked,? all possible ,low especially post OP.The one thing I find most related to cold ( in spite of other conditions that cause coldness) is my diabetes. H It is hormonal. Have you had a Glucose and Hb1 Ac test recently? Cold was the first symptom I had of very severe diabetes.I do not fit descriptions for it ie very underweight.I hope this gives you some ideal. I am surprised you have been told to take thyroxine every other day and not half the dose daily I would also suggest you should be seeing a good endo which covers all these things. My temp has always been very low. When my GP did not believe me ,her thermometer broke! Ha Ha!

Best wishes,

Jackie

[gill99 in reply to Jackie]

Hi,thank you for your reply i meant i take 150mg one day and 175mg the next sorry i didnt make the clear.I have not been tested for Calcium,Glucose ,Ferritin(do not know hat that is ?),B12,Folic or a Hb1 Ac test (do not know what that is ?)I am still under the consultant but only have the thyriod blood test he does not tell me the results just says what dosage have told him how cold i am and he felt my hands and said did you have this problem before op i said no that is when he said take 175mg .Should i see my gp ? have written the temp results down .

Take care Gill

[Hidden]

My sympathy.

At it's lowest, my temp was 33.7 so I have some insight to your dilemma. I was so cold I felt my body effervesced! I'm not sure of the techicalities of not having a thyroid gland but I would certainly speak with your Dr around it.

I find that wearing wrist warmers seenin.co.uk/adults/cold-ha... and a beanie hat helped retain the heat as does a good set of thermals and thermal socks. When I was really cold, I would wear two hats and three pairs of layered socks. Layering your clothes in very important. I have worn a thermal vest, teehirt, roll neck, fleece,body warmer and another fleece on top with thermals, jeans tracky bottoms and a blanket to feel warm and hold in the heat. I wore thin running gloves under a pair of thermal gloves, gaps in clothing were a no-no and everything touched everything else.. long sleeves, long legged socks.

I also find fleecy pyjamas and two hot water bottles, and fleecy hat and scarf have helped me keep warm at night. When really bad I have worn two sets of pj's and two pairs of socks in bed.

This may sound excessive but retaining what little heat I had was vital and this eased the situation. It is a real pain to keep having to dress up in so many clothes and you can feel a bit of a plonker wearing a beanie inside a building but believe me, it's much better than being so cold all the time and people will get used to you wearing it, once they understand (if the need to ) why you are doing it.

I also found that my temp. 'crashed' after excercise and everything I put in my body had to be above room temp or it drained my energy. I ignored the crashing temp, (sweat ran freely but it caused me no harm) and took the chill off things before I ate if it seemed too cold. Similarly, food stuffs which were too hot could cause me to break out in a sweat. It seemed that I was experiencing the three states of matter in my body at the same time. My blood felt like it had ice cubes floating in it whilst circulating slowly through my body and then wham! excessive sweating which I could mop with a towl!

I can only imagine that you may find this as destressing and frustrating to experience as I did. I did find though, that once I understood what I thought was going on in my body, it was a little easier to manage.

I think of my thyroid gland as the convection heater that heats my body and when it works well, it fills the whole room with heat and a sense of well being prevails. I guess if you don't have a thyroid, you don't have a heater at all and may have to look at ways of retaining heat through what you wear, what you eat and if you can heat your body through a bath or a shower, then retaining that heat before it dissipates can only be helpful.

Good Luck

[gill99 in reply to Hidden]

Thank you for reply ..

Gill

[Jackie in reply to Hidden]

hi again, Interesting!After reading your reply. Are you sure it is not Sjogren`s syndrome?.I have had that all my life so does daughter and 2 grand daughters. It is auto immune so quite common with thyroid disease.Most people just wrap up as you do.. You can have it treated but the norm is calcium channel blockers, Gosh put one grand daughter on those years ago also yo help migraine ( also auto immune) but they are horrible drugs with lots of dreadful side effects, the worse is fluid retention.

You should be bale to get blood results either by letter later or follow up letter or with it if delayed. Alternatively from the secretary. I even have mine as soon as they arrive on a ward.Are you getting copies of the endo`s letter to the GP? Some automatically send them, some you have to ask , secretary or consultant. You are allowed them now. I always have one for my own reference and my other consultants. It is invaluable.

I hope things improve for you.

Best wishes,

Jackie

[gill99 in reply to Jackie]

Hi,Thank you again I feel i am quite ignorant as no i do not get any results or any letters from my consulant (which i am paying private for )i think i need to visit my gp will let you know how i get on .thank you again take care Gill

[Jackie in reply to gill99]

Hi Make sure you ask the consultant`s secretary for them all! You can have them in retrospect. Some of my top consultants write letters to me with copies to GP , unsolicitated. My kind of doctor.! The GP may give you copies but better from source. MY GP says that is too much trouble!!I have often found ( to my cost) GP`s do not read letters properly! My consultants all think I am wonderful as I take all the latest copies of all letters and bloods to my consultations. Also the very good big hospital I have to go in ( unless in a coma ,when ambulance men go to nearest) . Like all up to date stuff and my own records on a print out. As most reliable method of receiving info if complicated.It is a legal requirement for Docs to give this information on request. Bloods always ask for print outs with ranges as most of them ( not just thyroid) vary.

Best wishes,

Jackie

[gill99 in reply to Jackie]

Hi Jackie,I have a appointment next month i will ask them to be sent to me.I have decided to see my gp this week as today i am still so cold and see what he says will let you know.

You have been most kind thank you..

Gill

[gill99 in reply to gill99]

Hi,went to the doctors should not have bothered he said it's winter and people without a thyroid feel the cold when i showed him my temp figures and he took my temp which was 35 at 6pm he said well people have different temps.So I will not be going again I got home and cried I suppose that is part of not having a thyroid..Take care gill

[evewood1]

Hi gill, just because you don't have a thyroid you don't have to put up with this - you are not receiving the correct treatment end of!

If you are not on enough thyroid meds you will be cold as you will not be able to maintain the metabolic rate required to keep you warm.

I do have a thyroid but it doesn't work too well so I take thyroxine too. I suffered for along while with being undermedicated and would feel cold a lot of the time. I really dreaded winter.

As soon as I got to the right dose I noticed that I was wearing on average 2 layers less of clothing and having less use for the fan heater in my office which used to be on constantly winter and summer as my feet were permanent ice blocks.

It is horrible feeling cold all the time and it would often stop me going out socially if I thought I would not be warm enough.

I repeat you do not have to put up with it but you may need a more understanding medical team.

Best wishes.

[gill99 in reply to evewood1]

Hi,thank you for replying i am very tearfull at the moment as i dont know what to do i do see the consultant on the 18th march but i am not going back to the gp as i was made to feel i was wasting his time but as i left he said would i like something for my sore throat i said no as its not sore it was damaged when i had my thyroid removed (my voice is husky) i have been in bed since 11am as i am so cold and its not a great way to spend my day off.Dont know what to do anymore ..

Take care Gill

[evewood1]

Hi again gill. I absolutely understand how you feel. Doctors often don't know how horrid all these hypo symptoms are especially men as, for one thing they never seem to feel the cold at all and really can't get how miserable it makes one to be cold all the time.

I'm afraid that many doctors(including my GP practice) are so not clued up about hypo symptoms and treatment. As I said before it really isn't necessary to put up with hypo symptoms as you should be able to take enough thyroid hormone replacement to counteract them but doctor ignorance of this tends often to deprive hypo sufferers of the right amount of meds as they stick rigidly to blood test results which can often be misleading especially when they will not take your symptoms history into account which say to me (an experienced layperson) that you need more thyroxine,

Something you could try is having a look at the thyroid symptoms list in the link below and see if you have any others apart from the coldness. If your consultant is any more sympathetic see if you can work on them. Also there is a recommendation from dr toft (see thread I have copied from shaws below) which might gain more sway with whoever you take this up with as this is blood test talk and so more likely to influence your dr/consultant.

Please do all you can to get clued up. If you get your results I could tell you if you have got a chance with the Dr Toft argument!

I am afraid I got so worn down with it all that I went privately to get it all sorted out as I have lost too much quality of life to this disease due to Doctor ignorance. But try as hard as you can with the NHS first.

Please do ask if I can help with anything else.

Best wishes,

Sarah

Link to symptoms list-

tpauk.com/articles/2431-sym...

shaws condensed comment:-

You are most probably not on enough medication. Dr Toft ex of the British Thyroid Association says we should have a TSH below 1

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

If you want a copy of the article which was in Pulse email [e-mail] to give to your GP. I would send it to him pointing out the appropriate sentence, so that he has time to read it before your appointment.

There are topics at the top of the page in this link but some of those within may not work as it is an archived site.

web.archive.org/web/2010122...

[gill99 in reply to evewood1]

Hi Saeah, thank you so much I do see the consultant on the 18th March I do pay privately he is the surgen who removed my thyroid but i do suffer with not saying i need to speak out for myself but i get in there and dont say anything. I will read everything you suggest. I will not go back to my gp about my thyroid..Thank you so much for caring I do wish i had never had my thyroid removed but had no choice thought when removed everything would be fine (not so).

Once again thank you for caring I will let you know how i get on next month

Take care Gill

[gill99 in reply to gill99]

Sorry spelt Sarah wrong ...

[evewood1 in reply to gill99]

No probs Gill, I know how awful it is to be in your shoes. My cousin also had her thyroid removed and shares some of your problems too.

I wonder do you have someone to go with you to the consultant for moral support? It might help to have someone you know with you if you feel nervous. Remember it is your life that this is affecting and you have every right to make it better for yourself but it never hurts to get some help with that if you can.

Secondly you are paying this consultant so make good use of them! (although it occurs to me that if you pay your taxes that you pay the NHS too).

Also try writing down any questions you have before you go.

hope it goes well, please let me know.

[gill99 in reply to evewood1]

Hi will let you know i see that all info says about low temp i will take my list of my temps and show him .Take care and thank you again gill

[gill99 in reply to gill99]

Hi,Saw the consultant today and I said I am struggling and said I am so cold showed him my tempreture readings for the last two weeks which ranged from 33.2 to 35,6 I said my days off I am spending in bed as I feel so illand I am quite tearfull.(was proud of myself as I usaually do not say anything) he said I am not supprised I have your results and you must feel qiute ill after the visit i had with the gp i thought i was imageing that i felt so unwell.He has put me on 200mg a day and i have to go back in 4 weeks as he said he needed to know my results. I was so relieved i forgot to ask him the results.Thank you for your support will let you know how i get on.

Hope you are well.

Gillx

[Hidden in reply to evewood1]

Symptom list from Thyroid UK found here:

thyroiduk.org.uk/tuk/about_...

Louise

x