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PLEASE HELP? I FEEL LIKE I'M DYING, Hypo symptoms getting worse. ;(...
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PLEASE HELP? I FEEL LIKE I'M DYING, Hypo symptoms getting worse. ;(

I was diagnosed hypothyroid in Spet 2008 with a TH of 5.2 and was put on 25mg of levothyroxine. I had all symptoms most cronic (chronic) being extreme fatigue, headaches, nausea, cramps and depression.

I was also put on 20mg citalipram which is gr8 and lifted the depression within weeks, after a few months the cramps and headaches and other symptoms got better all except the fatigue that is. My last blood test was in December and my TH has gone down to 2.5 now but since January I have suddenly become much worse, the fatigue is unbearable, I am having dizzy spells and headaches daily, I just know something is not right, I feel like I am dying and I don't know what to do?

It was hard enough getting my GP to even diagnose my thyroid problems and when I explain how awful I feel I just get told to excercise more or it is implied I am lazy which is so not true, I would LOVE to be able to do more and am dying to go back to work but with no energy and the headaches there is no chance.


I am always falling asleep if not through tiredness but because it's the only way to eliviate the headaches which are dibilitating at times! I feel so alone and like there is something much bigger going on than just an underactive thyroid!
I have been ill 18months, on treatment 8 months but the last 8 weeks I feel worse than I have ever felt in my life.
Yet my TH level has gone down, I just don't get it, why have I no energy at all? Why the constant pain and  headaches?

Please if anyone can help or has any idea's I would be so so grateful for some advice please?
I am lost as to what else I can do.

Thanks in advance.

Sarah x

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442 Comments Post a Comment
627830 tn?1320126154
sorry, no idea why this post is showing up 4 times!!
534785 tn?1329595808
Why haven't you had your TSH checked since December? It's possible that you've become hyper, though I can't say that your symptoms sound like a definite case of hyperthyroidism. The only other thought I have at the moment is that you might have had some sort of adrenal insufficiency resulting in the thyroid problems, in which case you'll need to rectify the adrenal problem before treating your thyroid problem. Why are you only seeing a GP for this? If you can, try to get to an endocrinologist, and if you can't, then you might want to visit another GP to get a second opinion on your case.

I hope you feel better soon...I can definitely understand how horrible it is to feel so hypo (and hyper at times, too!). =(
Avatar f tn
You should be having your bloods checked every 4-6 weeks until you get the levels stable.
.25mcg is not a great amount of T4 med to be on....I wouldve thought you wouldve been put on .50mcg daily to start with.
Have your FT3, FT4, TSH and antibodies tested for Hashimoto and Graves Disease.
When you have had these done,then more can answer yr questions and help you more.
Personally 2.5 is still Hypo (in my eyes) and I function better around the 2.3 point.
Some function better with their TSH being 1.0 - 2.0.
You have the find the right balance and to do this , have regular checks with an Endocrinologist or your Doctor.
He/She cant just put you on .25mcg T4 med and hope it 'will all go away' as it just wont.
It takes a lot of research on your part and also noting down the symptoms each day, pulse etc and eating as much fresh food as you can (no packaged stuff).
Your Docotr should be working with you on this and if he doesnt, get another one.
One you trust.
Good Luck
667016 tn?1238895504
I agree with smilerdeb, sounds like you're very hypo & should be on a higher dose of T4. Blood work should be done atleast every 3 months (mine were every month at first) to monitor your levels. Always make sure you're being tested for Free T3, Free T4 & TSH. As well as this, I also recommend keeping a log of your BP, daily temperature (before getting up), moods & any other hypoT symptoms.

It's early days for you - finding the optimal dose & the correct type of medication can be tricky & take a while. A good thyroid Dr is essential. Do as much research as you can yourself - factual information is a powerful thing.  

Hopefully by gradually upping your T4, this will improve things for you. If in time, you're still feeling really awful with a higher dose, then it may be wise to test for adrenal function/cortisol levels, pituitary function, sex hormones, reverse T3, insulin levels, iron studies, micronutrient imbalances/deficiencies and gluten, egg, dairy intolerances/sensitivities - (as all of the above can impair thyroid medication and also cause T4/T3 conversion problems at cellular/peripheral level). Then there's the option of trialling T3, T4/T3 combo meds or Armour/Natural Thyroid Hormone, but I would get the tests done first - to rule out any underlying problems.

Hope this helps, fingers crossed you're feeling better soon.  

Rach  : )  
627830 tn?1320126154
Thank you for your comments.

I am seeieng my GP again this week but she seems to think cos my levels are now down to 2,5 I am okay!! She only put me on levothyroxine at my request, she even thinks levels of 5.2 which is what I was is okay. I don't go as often as I should cos nobody there seems to understand or want to help me, I think they think I am a hypocondriact or something.

I shall pesist but it's draining to even get to the doctors and especially when they don't take me seriously I feel like just giving up.

I live in the UK and can not change doctors or surgery cos of my attachment area so am really stuck.

Avatar f tn
Before you go back to your Doctor.....write notes down on how you feel.
DEMAND answers.
It is good to research as much as you can so that yr Doc knows that YOU know what yr talking about.
Basically compromise.....
Ask yr Doc if you increase, you will have bloods done to make sure you dont go hyper etc.
Tell yr Doc that Hypo is he// and thats what you feel like at present.
my guess is you have gone a little more hypo since your last blood tests as 25mcg would only stop you going MORE would hardly make any difference at all to the 2.5 TSH.
I know I couldnt live with a TSH of 2.5 as a few weeks ago mine was 2.8 and it was sheer he//.
Take Care and research all you can about FT3, FT4, TSH, and hypothyroidism.
Go to the Doctors prepared.
It does pay off, I promise.
Hugs x
231441 tn?1333896366
Target TSH should be about 1.0.

Maybe as suggested above tell your doc how bad you feel and ask for a trial (with monitoring to make sure you don't go hyper) of a higher dose of T4.  25 mcg is a low dose. An increase to 50 mcg with monitoring shouldn't be a problem.

In some cases, particularly early in Thyroid failure it may take a while for the TSH levels to reflect the FT3 and FT4 levels (which is why they should also be tested if possible).

Let us know how you go.


523918 tn?1244553431
I agree with most of the comments, i would look to the hemoglobin, ferritin, transferin, iron in serum, vit B12 and folic acid to see if your not anemic, thyroid problems and anemia can be responsible for your fatigue, be sure about this.
627830 tn?1320126154
Thanks guys, all sounds good  if only my GP would listen!

Went to dr this morning as was feeling so bad, saw another dr as mine was off and she was just as dismissive, said my TH of 2.5 is totally normal and said all the fatigue was in my head that I just needed to get on with it, I was so shocked at her attitude. She obviously thinks I am lazy? She has increased my citalipram for the depression from 20mg to 40mg hoping that will shut me up.

I have now seen 3 GP's at my surgery and can't move to another one as it's not allowed so I dunno what to do. it's hopless. ;(

Avatar f tn
Target TSH is not always 1.0 as some have heart problems with a TSH of that value....myself included.
Mine is excellent at 2.3...if I go lower to 2.0 I get Supraventricualr Fibrillations and if I go to 2.5, I feel like cr@p so I stay at 2.3 if possible.
Everyone is different in regards to TSH levels.
Some feel good at 2.5, some dont.
We are all different in our 'good' balance.
And usually the TSH kept to a 1.0 level is for those who have had Thyca.
As explained, I cannot be at 1.0 or I go hyper and already had 3 episodes of Thyroid Storm prior to RAI last June.
My levels are good now and have been stable for some time so hoping they stay like that.
I did have vitamin deficiencies tests done and am on Mega B, Calcium with Vitamin D, Cranberry capsule and vitamin C.
I was first on Magnesium and zinc when I had RAI as I was deficient in those too but 4 weeks of those solved the problem.
It is important to make sure you get your vitamin levels checked as I have always eaten healthy but the RAI depletes a lot from your system and your body needs time to heal.
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