Doctor says I am OK then why do I fell so bad - Thyroid UK

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Doctor says I am OK then why do I fell so bad

tom210 profile image
20 Replies

Hello all, I am hypothyroid diagnosed a year and a half ago and the list of tablets I take just keeps increasing; Levo 100mg, Dulluxotine [Depression] Naproxen [Bloating] Mebeverine [Joint pain] Omeprazol [Acid reflux]

Latest blood test are :

Serum TSH Lebel 2.27 mu/L[0.27-4.2]

Free T4 16.2 pmol/l [11.0-22.0]

I suspect the doctor thinks I am a hypochondriac but anyway after the latest results she tells me results are good and I tell her I feel terrible, at times I am little more than a zombie. Thanks for any help you could give

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tom210
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20 Replies
jimh111 profile image
jimh111

Doctors tend not to have good knowledge of treating hypothyroidism. Usually fT4 needs to be around 20.0 to give you an average fT3 (the active hormone) which is what you need to get better. You need your levothyroxine increasing, your TSH will probably end up around 1.0 or lower when you are well. Unfortunately, GPs are often not able to obtain fT3 assays which is why they tend not to be aware of it.

By the way, I can see you are not well, you mixed up naproxen (for joint pain) and mebeverine (for bloating).

tom210 profile image
tom210 in reply tojimh111

Hello Jim, thanks for your reply. I will try for an increase in thyroxine but I am not hopeful as it was hard enough getting doctor to put it up to 100mg, regards fT3 doctor isn't interested only T4 will be tested, you are right I did mix up the medications, to tell you the truth I am sick of all of them and seriously considering giving up he lot I am sure I didn't feel this bad before my initial diagnosis

Marz profile image
Marz

Do any of your medications affect the Levo/T4 you are taking ? the PIL should tell you. You forgot to mention how much T4 you are taking.

Have you had B12 - Ferritin - Folate - VitD tested ? If low they could be causing you so many symptoms. Also no Thyroid Anti-bodies - TPO and Tg - both need testing to rule out Hashimotos.

Are you sure you need all those meds - perhaps improved Thyroid levels would help to eliminate some of them .... I am sure you feel terrible and it could be from taking so many pills.

greygoose profile image
greygoose in reply toMarz

Totally agree. And if your FT3 was optimal, you probably wouldn't need so many pills.

tom210 profile image
tom210 in reply toMarz

Hello Marz, thanks for your reply No I do not know how each drug effects the other bu it seems each time I go to the doctor I get a new one without any explanation as to how they work together. I have had Vit d tested last year

Vit B12 level 413 pg/ml [191-663]

Serum Folate 7.6 ng/ml [>4.5]

In regards to Hashimotos my doctor tells me the treatment would be the same regardless of Hashimotos or not

Marz profile image
Marz in reply totom210

If you read the Patient Information Leaflet - PIL - as mentioned in my earlier reply - you may see which pills work against others. You can always google a pill and read about its side effects and then decide if it is for you. We do not always have to rely on the GP. I live in Greece - look after my own records and generally fend for myself - then there is the language barrier - which although they all speak English - there are still subtleties that can be missed.

We really have to do things to help ourselves.

I have not heard of taking a PPI for a hoarse voice - have you read all the side effects of that particular drug ? It could also be the cause of your Low mood - along with Low B12 and Low T3 ( not tested ) The brain has more receptors for T3 than any other system in the body - and yes it is needed in every cell of your body - so when the result is low - you do NOT have enough T3 to go around. Thyroid anti-bodies ?

Which Vitamins and Minerals are you supplementing ? How long did you stick at the Gluten Free diet ? - it can take time for you to feel well - Rome was not built in a day :-)

Think it is time to make a - Things to Do - list :-)

eeng profile image
eeng

Omeprazol interferes with the take-up of Levothyroxine. In fact lots of people find that the 'acid reflux' they take the Omeprazol for is actually due to low stomach acid, and they find they have a lot fewer issues when they take a betaine-pepsin supplement. If you do need Omeprazol you need to take it a couple of hours away from your Levothyroxine.

When your thyroid levels are right you might find you no longer need the antidepressant (or at least a lower dose) because depression is a symptom of low thyroid.

Have you tried going strictly gluten-free for a month or two? A lot of hypothyroid people find that this helps a lot, not only with the hypothyroid symptoms, but also with bloating.

How are your Vitamin D levels? Many people with hypothyroidism find their vitamin D levels are very low. The theory is that low thyroid hormones => low stomach acid => poor absorption of vitamins and minerals and Levothyroxine => low thyroid hormones......). Vitamin D deficiency is associated with joint pain.

I hope this helps.

tom210 profile image
tom210 in reply toeeng

Hello eeng, thanks for your reply. In regards to Omeprazol I started taking it because I kept losing my voice completely, I had tests done and they said it was due to acid reflux, it has helped in regards to voice it does not go as often as before, I do not take it at the same time as thyroxine. I too hate the idea of taking antidepressants but when you find yourself constantly thinking of ways to kill yourself you have to try something. I did try gluten free but really that is a monastic lifestyle if you can't have a little of what you fancy what's the point of living

Clutter profile image
Clutter

Tom210,

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

tom210 profile image
tom210 in reply toClutter

Hello Clutter, thanks for your reply. I have read the pulse article. It's great in theory but it breaks on the wheel of intransigent doctors

shaws profile image
shawsAdministrator

tom210 I am sorry you are still unwell after 1 1/2 years being diagnosed. Unfortunately you are suffering from the usual combination, i.e. doctors who do not know how best to treat patients with hypothyroidism and who prescribe a myriad of prescriptions for the clinical symptoms instead of a proper, optimum, dose of thyroid hormones.

We have to educate ourselves to eradicate the symptoms. i.e. If hypo, everything slows down due to our body not having sufficient T3 (the Active Hormone required in the billions of receptor cells our body needs, the brain contains the most and the heart next, I believe (I am not medically qualified).

With hypo, our temp is low, our digestion is slow, not sufficient stomach acid to dissolve protein, low temp. and I'll give a list of clinical symptoms. An optimum of levothyroxine can resolve all of them as they are inter-connected with thyroid hormones.

New research shows that a combination of T3/T4 can improve our wellbeing too but it is restricted due to the high cost but some of our members source their own.

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

The more you realise that doctors don't know, neither do many Endocrinologists and members who've put all their hope with a Consultant have been seriously disappointed. So most on this forum 'Do It Themselves' :)

Doctors mistakenly believe that as soon as the TSH is 'somewhere' in the range that we don't need any more increases in levothyroxine. This is not true. We have to have a TSH of around 1 or lower and some need the TSH suppressed (and NO we wont have a heart attack unless very frail. We are more likely to get one with too low a dose as our body needs optimum to function from head to toe.

thyroiduk.org.uk/tuk/testin...

Always get a print-out with the ranges. Marz has suggested the other important hormones/vitamins which should be optimal.

Blood tests for thyroid hormones have to be the earliest possible, fasting (you can drink water) and leave a gap of about 24 hours between your last dose of levo and the test and take afterwards.

Thyroid hormones have to be taken on an empty stomach with one full glass of water and wait about an hour before eating. Food interferes with the uptake.

chriskresser.com/the-thyroi...

web.archive.org/web/2010103...

tom210 profile image
tom210 in reply toshaws

Hello Shaws, thanks for your reply. Thanks for the information. In regards to T3 my doctor will not entertain any talk of it and I did look into sourcing it myself but you find yourself on dodgy websites not really knowing what you are buying and how secure/regular the T3 will be available. In the end I didn't go through with it, I suppose I baulked at the prospect of sending bank details/money transfer to some place in Montenegro which I couldn't be sure was a scam. I see people on this site scrabbling round for new sources of T3 and wonder to myself is it worth it, what if I took it and felt great but then couldn't obtain and or afford any more, would I be in a worse boat than I am in now?

shaws profile image
shawsAdministrator in reply totom210

I undersand your dilema and that's why it is advisable to source from a reputable site.

Your doctor should raise your dose of levothyroxine and if you email louise.robertws@thyroiduk.org.uk for a copy of the Pulse Online Article by Dr Toft. Dr Toft was President of the British Thyroid Association (and is Physician to the Queen when she's in Scotland) and this is an excerpt from the article so show your doctor and say that you'd like an increase in levo to bring your TSH down which in you can increase your T3. (T4 i.e. levo should convert to T3 as that's what it is supposed to do but we need a decent dose. Extract from Pulse Online article:-

"6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

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. "

There is also natural dessicated thyroid hormones that contain all of the hormones our healthy gland would produce and were successfully used until the 60's when the big push came in with levothyroxine and blood tests. Again, if you wished to trial you'd have to put up a new post asking for a private message to be sent to you. I'll give you another link about NDT.

hypothyroidmom.com/presiden...

cazza1001 profile image
cazza1001

It is very common for Thyroid sufferers to have some form of gut problem – Acid Reflux, GERD, IBS, bloating to name a few – this is because problems with the guts microflora negatively affects the guts ability to convert T4 to T3 and even cause higher RT3. The general health of the gut affects T3 – because low T3 causes low hydrochloric acid production which in turn causes inability to convert T3 and this will affect the absorption of calcium, selenium, Iron, iodine, Zinc the B and D Vitamins too. And will cause issues like bloating and reflux etc.

Your depression medication falls in the same camp in that Mood/ anxiety is massively affected by T3 levels - think you need to know them to see if you are converting properly.

Good luck

tom210 profile image
tom210 in reply tocazza1001

Hello Cazz, thanks for your reply. I was all set to get a blue Horizon blood test for T3 and Hasimotos but my doctor says my treatment will be the same regardless of these tests so I thought what is the point of getting them

cazza1001 profile image
cazza1001 in reply totom210

Still think you need your T3 because if they are not in the top zone you would have a case for higher meds - which may enable you to ditch some of your other meds. Good luck

cazza1001 profile image
cazza1001 in reply tocazza1001

Also - your acid issues could well be too little acid - especially as low T3 messes with the acid levels ... I would try a week off with a good probiotic and a teaspoon of cider vinegar morning and night .

mrpenguin profile image
mrpenguin

You have mixed up Naproxen & Mebeverine above. Naproxen is for joint pain & Mebeverine for intestinal spasms/bloating etc..

Naproxen should be taken with food because it causes stomach/intestinal upset and should not be taken with antidepressants.

I would if I were you get yourself a really good Turmeric supplement & a Glucosamine supplement and see how that helps with your joint pain (Then you can get off the naproxen) as it did wonders for me, I have no pain anywhere. My hip used to crunch when I walked, not anymore!

How do you know you need omeprazole? I took it for a long time but things just didn't get any better and it wasn't until I ditched it and replaced it with probiotics & digestive enzymes that my digestion improved and the bloating went away which lead me to believe I had too little stomach acid rather than too much (Both scenarios cause similar symptoms).

I find it shocking that doctors so readily dish out omeprazole without any checks of any kind when for a large percentage of people the issue is already low stomach acid so to take so little care and lower it even further in people is just crazy. Then you end up going back with even more symptoms caused by even lower stomach acid because you're breaking down and absorbing even less of what you're eating and they give you even more pills to counteract that! It's a tightrope.

Marz profile image
Marz

Hey - you have had some great responses 😊 - would love to read your feedback .....

helvella profile image
helvellaAdministrator

Do you have any references that:

1) omerprazole blocks absorption of [ ...] ferritin

Do bear in mind that ferritin is absorbed by a completely different pathway to "mineral" iron (like ferrous sulphate), or to haem iron.

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