Losing the will to fight this. I am tired!! - Thyroid UK

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Losing the will to fight this. I am tired!!

8 Replies

Wish everyone a Happy Easter! Now I can be my miserable, sleep deprived, fat self!! I cannot sleep. That's it! I've been on zoplicone for 6 yrs. Bipolar for 20 yrs. Diagnosed with hypothroydism for 2mths, with high cortisol level. I get into bed at 11.30pm/midnight. Today, or is it yesterday, I fell asleep at 11.30am. Awake at 3pm. Sometimes it's 6pm before I wake. I have no life. I'm now agoraphobic! There. I've said it!! Today I opened my bathroom window & nearly passed out, because I hadn't looked outside for 2 wks. I'm 40 in November. This isn't living. My Endo says that my hormone probs are due to my bipolar. I had a complete hysterectomy 3yrs ago, now on HRT tabs. My GP blood test results were

(just showing the ones with a * by them).

LFT

ALT 41. iu/L 0 - 40

CRP

C-reactive 17. mg/L 0 - 10

TSH

TSH 5.2 miu/L 0.3 - 4.2

FT4

Free T4. 10.5 pmol/L 12 - 22

CORTISOL

Cortisol 1033. nmol/L 170 - 535

Following cortisol reading after overnight Dexamethasone (1mg) suppression test

Cortisol 72. nmol/L 170 - 535

(It's noted that results do not show complete suppression).

BTY!!!! GP has me on 25mg Levo. Endo said not to change until I see him in JUNE!

Any help would be amazing. I know I have bipolar, but the last 6mths has me really questioning my sanity.

Much love, Charlotte.

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8 Replies
thelady2003uk profile image
thelady2003uk

Hello Charlotte, Happy Easter to you too! I cannot answer your questions as I am not really up on this hypothyroid lark myself and I don't know anything about Bipolar. But I just wanted to drop you a line and let you know that you are not alone with the sleep problems. I am just like you, go to bed around midnight then lie there for a couple of hours then get fed up with tossing and turning so I get up, I have had 5 hours sleep in the last 3 days, I too have got zopiclone, no good for me they give me vertigo, I used to be able to take Nytol one a night - half a tablet used to be enough for me cause if I took a whole one I was like a zombie the next day, now I could take ten of them and I still wouldn't be able to sleep. I was diagnosed with hypothyroidism 5 years ago and I have NEVER been able to tolerate any of the levothyroxine that they put me on, I have been allergic to all of them. I am sick and tired of battling with doctors and Endos asking them to try me on some other form of meds in an effort to get myself well, but at the end of the day I have realised that they don't give a dam about me. I have got vertigo, suffer with claustrophobia and all the other long list of symptoms, but for you to have to suffer bipolar aswell I do not envy you one bit. Please don't question your sanity, because you are not alone we all know what you are going through and you have just got to keep strong. I sit listening to the birds waking up every dawn and that makes me smile and if the sun shines aswell that's another bonus - except of course when I am trying to get to sleep and there's too much light coming in! Look after yourself and remember you are not alone. LOL Sharon XX

Marz profile image
Marz

Hi Charlotte - felt so sad reading your post and feel you have been short changed by your doctor. There is so much written and talked about with the connection of mental issues and the poorly performing thyroid. I am not a medical person - but can see that your TSH is far too HIGH and your FT4 too LOW. Also your dose is too low for you it would seem.

The thyroid hormone T4 converts into T3 and this is the most active of thyroid hormones and required in trillions of cells in the body for good function and optimal health. The cells in the brain have the most T3 receptors and then the gut lining has the next biggest demand. So if you do not produce enough T4 and the conversion to T3 is even less - then it its understandable why things can go wrong.

Years ago T3 was used as an anti-depressant. This is why in my opinion it is important to have the FT3 tested - which they seem not to do on a regular basis in the UK. That still only tells you what is circulating in the blood and NOT what is happening at a cellular level. Think of the cells in the body - as satellite dishes - there are trillions of them - receiving information from the various hormones in the blood - and carrying out their duties.

Am afraid your Endo is misleading.....the treatment for the Bi-Polar ? is more than likely compromising your thyroid. Not the Bi-Polar causing your problems. If you have the time and strength then check out the tags on the right of this page and have a read of other peoples experiences with regards to mental issues to begin with and then whatever else grabs your interest.

There are many people on this forum who have personal experiences that they will share with you - as Sharon did above. In my opinion it is a scandal that so many people are suffering in the way you are. I have a daughter who has struggled with lack of Thyroid knowledge from her doctors - and it has ruined our relationship as I struggle to help her. I now realise looking back over the years that she too could well have had a thyroid problem from an early age. Now 44.

I truly believe when you are adequately treated - which may involve the addition of T3 - you will regain the balance in your body that you are seeking.....which may include a great improvement in your mental issues too.

It can be a long and bumpy road - but at least you do have your diagnosis of Hypothyroidism. Also you are in the right place here with so many wonderful people to support you on your journey.

Someone else with help you with Adrenals. Still learning ! I also feel that you were given HRT as another sticky plaster over your Hypo symptoms and sorry you had to suffer a hysterectomy. If only there were Thyroid Clinics like Diabetic Clinics where someone could do dot-to-dot and listen to all the symptoms/conditions and connect them. Not always the case of course but the more I read and learn the more I understand. Sadly Gynaecologists rarely talk to Endo's to discuss a case....and all the symptoms remain in little boxes with individual treatments when often there is one underlying cause.

Wishing you health soon - and just keep posting. I think it was very brave of you to share your story. Hope you have a peaceful Easter Sunday. I live in Crete and our Easter is not until May ! We are two hours ahead so another reason why it may seem I am up with the sparrows !...........

Jackie profile image
Jackie

Hi I do so agree. Essential that you have a free T3 test, even if you have to pay for it. However, the endo should have done this and all the other thyroid related tests. Check by having a copy of endos letter ( if not already) and a copy of hi s/her blood test + ranges ( all vary).Your T4 ( levo) is much too low but also I would say extremely likely that you also need T3, T3 helps the weight and lots of symptoms. Start slowly bad always split the daily dose ( 12 hours apart).

Zopiclone, is not nice and I doubt if it is working now. Try alternative things. also Caamile tea very good. I take Asphalia, see their web site, for sleep and find it very good. They usually send you out a free sample, small ,good firm.I am quite sure that your Bipolar is effected by the thyroid being under treated. Normally on treatment we expect the T4 to be in top third of range and FT3 near the top. Quite often the T4 ( levo) does not sufficiently convert to Free T3, it should. They and TSH were always tested but now it is down to costs.

On the endo front, with this info., phone and say you desperately need a cancellation if there is not an earlier appointment..Endo`s secretary.If not happy with your endo have a new referral. This time do all your research first and do not rely on GP`s choice.

I hope that helps. You will get better but it can take a year or more, on the correct meds.

Best wishes,

Jackie

Jackie profile image
Jackie

Sorry should read Camamile tea!

Also you may not know but to reply to a certain person you need to click on " reply to this" under their post.

Cortisone is very powerful. Most endo`s prefer to first have the thyroid right and only then to look at prescribing the cortisone as then sometimes not needed.

Jackie

PinkNinja profile image
PinkNinja

What is your endo's reasoning for not increasing your dose? You are clearly under-replaced. You may feel very much better after increasing your thyroxine dose.

Your bipolar disorder is unlikely to be a cause of your hypothyroidism unless you have been taking lithium. That can cause hypothyroidism. What is just as likely is that you have been borderline hypothyroid and that this is causing the bipolar symptoms (speaking as someone who has been there!)

You can reduce your night time cortisol (and therefore hopefully sleep better!) by taking a magnesium supplement at night. It is wise to build this up slowly. Magnesium citrate is better than others as it is more easily absorbed. Epsom salts in the bath are another option as magnesium is easily absorbed through the skin. Zinc also helps with cortisol levels.

Another possibility is meditation or even hypnotherapy, both of which helped me. Taking your levothyroxine at night rather than the morning can also help. It seemed to help me feel more awake and alert in the mornings when I took mine at night. Now that I am taking NDT I still need to take a small dose at night. It seems to help me sleep better and makes the mornings slightly easier.

I hope you can get your increase in levothyroxine soon and start to feel better.

I have to go on an easter egg hunt with the kids now. I just want to go back to sleep, lol :D

Carolyn x

Hi Lambchop, I must say first I have no real knowledge of bi-polar and am only just diagnosed hypo and early days on treatment but I do have experience of zopicolone. I was taking it for 6 years just for insomnia,long before hypo diagnosis.It worked brilliantly for me for around 5 years then I found it wasn't working as we'll and then working hardly at all.Occasionally I had to take 2 x 7.5 mgs to work.I didn't want to go down the road of needing to increase it to get the effect so decided to wean off it gradually over about a month.Can only say for myself,this was not a problem despite the warnings of problems coming off them.This was 7 months ago, and gradually my sleep improved for the 1 month withoutt them sleep was a little patchy still but no worse than when I was taking them, then sleep improved greatly without them.I have a few left over and on very rare occasions if still laying there at 2 am I will take 1/2 37.5mgs and this does the trick,but stress this only needed now so very very rarely. May not be the same for you but if no improvement with trying anything else it may be something to look into.Like everything else our bodies do eventually get tolerant to these drugs and the effect of them is drastically reduced. Just a thought, hope you feel better soon. Chin up!

alangardner profile image
alangardner

CHARLOTTE , I sincerely hope that you take on board the info,and more important,the support of the replies you get on this site . I personally do not have any knowledge of bi-polar conditions ,but, I do know and realise that too many conditions and there treatment can and are related so that the treatment for one [ although correct ] can all to often be detrimental to the other condition and therefore the treatment will drastically affect the patient==US== in my experience all treatments have to be treated in conjunction with each other ,if necessary ,to allow for incorrect diagnosis and therefore 'crap' or less than useless treatment......keep going girl while this site is here YOU WILL NEVER BE ALONE and you will learn more about your condition and yourself --------we are all with you

I want to thank each and everyone of you for taking the time to read & answer my multiple questions! I have found your support truly amazing & inspiring (if a little scary)! I am seeing my GP on Friday, & I'll get a copy of my latest results. Just about to have a cup of camomile tea!

Thank you again, Charlotte. X

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