I am new to this Thyroid conundrum... Long story short: I am 48 feeling like i am 90. I experience debilitating Extreme fatigue, vertigo, generally feeling sick, sore all over, with feet and legs killing me. I am pretty much brain dead and cold all the time. I have also have experienced weight gain for good measure. This has been going on for over a year and my GP has been slow to respond, originally blaming possible beginning of menopause (although I have regular, heavy periods) and possible sleep disorder (was diagnosed with borderline respiratory sleep apnea for which i tried a cpap machine i could not stand)
.Tpo antibodies under 4, my doctor says this is therefore not Hashimoto . TSH 5.63 down from 8.78 previously with low free T4 at 11.93. T3 1.8.
Started treatment trial 25 days ago; Eltroxin 25 mg and oprymea 3x 0.088 for legs pain.
No change so far, except for the feeling cold somehow getting a bit better. I am feeling totally helpless and sinking into depression (i also recently came off venlaflexine 75mg which i took for ages and did not like the side effects).
I live in Ireland.
I need a solution. Thanks for your help
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Sdd2
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You don't ask any specific questions, so I'm not quite sure what you want to know. But, several things went through my mind as I read your post:
1) Heavy periods can be caused by low iron. Low nutrients are often found in hypos, due to low stomach acid. So, you need to have your vit D, vit B12, folate and ferritin tested. Unless they are all optimal, your body will be unable to use whatever thyroid hormone it has. So, supplementation will probably be necessary. But, don't count on your doctor for that! They don't 'do' nutrition in med school, so know next to nothing about it. We're here for that.
2) Sleep apnea is a hypo symptom. But, just as for nutrition, doctors know next to nothing about symptoms. Your sleep apnea should improve as your thyroid hormone levels rise, but it is not the cause of all your problems. The words 'cart' and 'horse' come to mind.
3) One negative antibody test does not prove that you don't have Hashi's, for several reasons:
a) antibodies fluctuate, so just because they're negative today, doesn't mean they will still be in a month's time.
b) there are two antibody tests - TPO and Tg - the NHS only does TPO, but if Tg is high then you have Hashi's.
c) some Hashi's people never even develop high antibodies, they are diagnosed by ultra-sound when the damage becomes visible.
4) Unless you always have your blood drawn under the same conditions, you cannot compare results. TSH is highest in the early morning, and drops throughout the day. So, we always recommend testing early in the morning - before 9 am - after fasting over-night. If you're on levo, leave a 24 hour gap between the last dose and the blood draw. Then, you can see if your TSH has really changed.
5) When giving results, please always give the ranges. They vary from lab to lab, and we need to see the range used by the lab that did your blood analysis to be able to interpret the results.
6) Treatment trials are just a doctor's way of avoiding treatment. To begin with, he started you off on too low a dose. The normal starter dose is 50 mcg unless you are very young, very old or have a heart condition. These days, doctors interpret 'very old' as over 50! But, 25 mcg is likely to make you worse, rather than better. They therefore feel justified in saying that the treatment didn't work, so we'll stop it! Beware of tricksy doctors!
Did he tell you to go back for a retest any time soon? The usual protocol - that very few doctors seem to know about - is to retest after six weeks, and increase the dose by 25 mcg. And to continue that process until all your symptoms have gone, and your TSH has come down to 1 or under. But, if you go back to him and report that you don't feel any better, or that you feel worse, even, he will feel justified in stopping the treatment. So, best to say that your do feel a bit better, but feel you need an increase in dose.
7) 25 days is nothing in thyroid time. It takes at least 7 days for the body to start processing this new influx of hormone, and at least 6 weeks to feel the full effect. But, as I said, on such a low dose, you might even feel worse, rather than better. Did your doctor tell you how to take the levo? It should be taken on an empty stomach, leaving at least an hour before eating or drinking anything other than water. And leaving at least two hours before taking any other supplements or medication. So, don't take your levo and oprymea together.
8) This is a long, long journey. And you're only just starting out on it. Try not to let it get to you. And, never, never tell a doctor that you're depressed! They're just waiting for you to say that so that they can prescribe anti-depressants, which won't help and could make you feel worse. Depression is a hypo symptom. The treatment is decent levels of thyroid hormone, not anti-depressants. You will come through this with support and advice from this forum. But, don't expect much from your doctor. He knows very little about how this works. He didn't 'do' it in med school! Chin up! You're not alone.
Forgot to say, I'm not sure that oprymea is the right treatment for your leg pain - especially given that it's probably down to low thyroid and/or nutritional deficiencies. It's a treatment for Parkinson's and has a whole shopping list of side-effects:
"The following adverse reactions are expected under the use of Oprymea: abnormal dreams, confusion, constipation, delusion, dizziness, dyskinesia, fatigue, hallucinations, headache, hyperkinesia, hypotension, increased eating (binge eating, hyperphagia), insomnia, libido disorders, nausea, peripheral oedema, paranoia, …"
Much the same as hypo symptoms, so could lead you to believe that you aren't improving, and have even developed new symptoms! If I were you, I would go back to your doctor and discuss if this drug is really appropriate for you.
I was shocked by the prescription of a treatment for Parkinson's Disease for leg pain. (I looked up oprymea, I'd never heard of it before.)
Sdd2 Have you ever been officially diagnosed with Parkinson's? Or is your doctor treating you with a drug for Parkinson's because of a similarity of symptoms?
Leg and foot pain can be caused by loads of different things. Could you actually describe the pains you are getting in more detail, in your feet, legs or elsewhere? We might be able to make some suggestions for safer treatment. Are you getting atrocious cramp? Burning pain? Muscle spasms? Stabbing pain? Anything else?
You will need bloods retested 6-8 weeks after starting on 25mcg Levothyroxine
This was only half the standard starter dose, often can make you feel worse, until dose is increased
It's enough to turn your own thyroid hormone production down m but too little replacement
Dose is increased in 25mcg steps, retesting 6-8 weeks after each dose increase
This continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Very important to test vitamin D, folate, B12 and ferritin
Some symptoms sound like low B12 or low vitamin D
Ask GP to test these at next blood test, or test privately
So for full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or both antibodies or vitamins thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, best not mentioned to GP or phlebotomist)
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Sdd2 I'm sorry to hear you're suffering. I'm only four months into this adventure myself so don't have much advice for you. I'm impressed that you were able to wean yourself off venlafaxine. I've tried several times but the withdrawl was agony. I hope you get some relief soon from both the thyroid and the depression. Please try to remain hopeful. It will get better once you've figured out the right meds and dosage.
I was diagnosed with hypothyroidism about 10 years ago. I'm currently on 150 mcg Eltroxin. A couple of months ago I got a notion to stop my medication and see what happened, because I thought it wasnt helping me. I was off it for about 6 weeks I think
I then had myself privately tested.
These were my results which were pretty dramatic.
Thyroxine (T4)
23.00 nmol/L
View
Thyroid Stimulating Hormone (TSH)
68.80 mIU/L
View
Free Thyroxine (T4)
2.70 pmol/l
View
Free Triiodothyronine (T3)
1.20 pmol/L
View
Anti-Thyroid Peroxidase Antibodies (TPEX)
12.30 IU/ml
View
Anti-Thyroglobulin Antibodies (TGAB)
12.20 IU/mL
Clearly the Eltroxin WAS helping me so I went back on it straight away. That said I never had all the symptoms you mention. Mostly extreme fatigue, weight gain and sleep apnoea.
The weight gain and sleep apnoea was solved last year when I got shingles and lost 28kg in 9 months.
I still get fatigued but I am 67 and I do have a very demanding physical schedule since I keep 11 rescue ponies, so I guess thats normal.
Fight the temptation to sink into depression. I think that the depression is partly because of the fatigue that accompanies this rubbish condition. It puts you off doing anything or feeling anything as it all seems like a big effort. There is hope out there, lots of people on here prove that with their success stories. You are on the first stage of your recovery now. Read up about your condition, become informed and be determined to get well and to badger your doctor for what you need. If you succumb to the fatigue, your doctor may well not bother to medicate you properly. I’ve said this on here before, my lovely, now deceased, dad always said to me ‘in life, the squeaky wheel gets the oil.’ I think he is right. Pester the professionals to get you well. Get informed and get on to it. Feeling better is just down the road now... good luck. 😀
I had similar results. No medical help despite an ultrasound that showed hashimotos. Put on.a useless trial same as you at same age. I now take NDT self medicate. Feel normal now. Don't put up with it. I too had heavy periods. Anaemia is not good. Get it checked and sorted.
Hello, Sdd2,
If possible, My suggestion to you is to seek out an Endocrinologist, who specializes in the endocrine system and can oversee your care and who is qualified in dealing with all issues involing the thyroid. Your primary care physician can only do so much for you whereas an Endocinologist, is trained specifically to get to the bottom of your issue/issues. For example, my mother was having parathyroid issues but my mother's primary care physician did not diagnose her problem correctly and one reason may have been because there are so many different symptoms and signs to this disease and it can be missed by your primary care physician but when my mother saw an Endocrinologist, he was able to diagnose her problem correctly as having Hyperparathyroidism. Please don't misunderstand me, I am not saying you have any particiluar disease, but only please see an Endocrinologist because they can run tests and make a treatment plan for you. You may or may not need to continue to visit an Endocrinologist after a few visits but I have been going my Endocrinologist for years now. One reason that I continue to see my Endocrinologist is because I have friends who decided they didn't need to continue going to their Endocrinologists and they are having re-occuring problems which I think in my opinions is because they stopped seeing their Endocrinologist and instead started seeing their regular GP for their thyroid problems. Good luck to you.
I don't know if you have the means to go private but I went to a private endo in Clane General Hospital Kildare and found her brilliant. She looks into everything and believe me I went through hell with Hashi's. If you want her name send me a private message and I will forward it to you. The info greygoose gave you I totally agree with and you can find not better people than those here to help you. The best of luck with your journey.
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