Apology and question: Hi everyone. I now realise... - Thyroid UK

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Apology and question

Hi everyone.

I now realise that I have been "confrontational", and I sincerely apologise to everyone for my behaviour.

I would like to make a fresh start, and this time I WILL listen, and not "argue"!

I will post my very recent thyroid function test results, for those of you who may not have seen my previous posts.

FREE T3 (CLIA Method) 2.62 pg/ml (range (1.40 - 4.18)

FREE T4 (CLIA Method) 11.39 pg/ml (range 8.90 - 17.20)

TSH (CLIA Method) 1.55 mIU/L (range 0.30 - 4.5)

My symptoms are, in no particular order,

1. Heat intolerance in hot climates, with associated odema of the hands and feet/ankles.

2. Constant tiredness and waking up in the mornings feeling very tired.

3. Excessive sweating after exercise, and a long time "cooling down".

4. Nervousness (feeling like I am trembling inside).

5. Irregular heart rate.

6. Tremor (uncontrollable twitching of my left hand fingers).

7. Difficulty sleeping.

8. Dry eyes, which are red in the mornings, but clear up after using Optrex eye drops.

9. Unsteady gait (but not dizziness).

10. Unexplained weight gain.

11. Loss of coordination (difficulty signing my name now).

12. Memory problems (forgetful, and difficulty in "finding the right word during a conversation").

13. Extreme thirst.

I think that just about covers it?

These symptoms came on fairly suddenly 2 years ago, and have progressively got worse.

Additional info:

I have diagnosed PA, and have to take regular B12 injections to control returning tingling fingers.

I take 0.5 mg Clonazepam daily for a diagnosed anxiety disorder, very recently been increased to 0.5 mg up to 3 times daily to help with recently diagnosed mild bipolar 2.

Very recent liver and kidney function test normal, and an AB ultrasound only showed a very mild fatty liver (with no scarring or enlargement).

A local doc (in Oman) diagnosed me with subclinical hyperthyroidism, and prescribed 5 mg Carbimazole to be taken 3 times daily, for one month.

From replies to my previous posts, I have been advised that the local doc's diagnosis is wrong, and been advised not to take the Carbimazole.

I am desperate though! I feel so sick, and finding it extremely difficult to work and function.

Please be aware that I am not able to have ferritin, folate, Vit D tested. Those tests are not available here in Oman. Antibody tests for Hashi's or Grave's are also not available.

The nearest endo is 1,000 kms away, so it is not possible for me to see a specialist here in Oman!

One member on here has suggested that my symptoms are due to long term use of Clonazepam?

My main question is this though? Should I take the advice/diagnosis of the local doc, and take the Carbimazole, on a trial basis, and what the consequences may be if I take the Carbimazole, if I do not have hyperthyroidism?

I will, this time, accept any advice.

Thank you for any advice and info.

Patez

36 Replies
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patez, what was your medication schedule for the past week? Which month were you on carbimazole in relation to the above test results? Do you know the list of side effects for chlonazepan?

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Doses higher than 0.5–1 mg per day are associated with significant sedation

(0.5 mg clonazepam = 10 mg diazepam),[104] it is said to be among the class of "highly potent" benzodiazepines.

So you are taking equal to 30 mgs. of Valiuim?

Benzodiazepines inhibit cold-induced thyroid stimulating hormone (also known as TSH or thyrotropin) release.[1

Clonazepam decreases release of acetylcholine in the feline brain[

Were you having seizures?

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Hi.

Thanks for the reply.

I will answer both your questions in 1 reply.

I used to take 10 mg Valium, but it made me rather drowsy at work, so the psych changed me to 0.5 Mg Clonazepam, stating that it was less sedating, and I manage fine with that. Not drowsy now at work.

I suffered with panic attacks, following a nasty divorce, and when I tried to stop taking the Valium, the panic attacks returned, so I was diagnosed with an anxiety disorder.

I did not take any Carbimazole at all, after the advice I received on here that the local doc has misdiagnosed me with Hyperthyroidism, from symptoms and the thyroid test results, and warned not to take the Carbimazole.

My daily medication is the Clonazepam, 1 X 0.4 mg Tamsulosin (for enlarged prostate), 1 X 500 mg Vit C and 1 X 10 mg Rosuvastatin (for slightly high cholesterol).

I do now know the list of side effects of Clonazepam, after one of the members on here pointed it out! Prior to that, I did not know that Clonazepam had any side effects other than the slight drowsiness! It is dispensed by the psych in a plastic container, with no patient leaflet, and the psych did not tell me anything either. I have a consultation every 4 months, and the psych just gives me a repeat prescription! He is very aware of all my symptoms, but I am going to discuss it further with him in 8 weeks time, because my symptoms are getting worse!

As has now been pointed out to me, the side effects from Clonazepam are very similar to a thyroid problem?

Prior to this recent knowledge about Clonazepam, I was convinced that I had a thyroid problem!

Patez

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But you have no evidence of a Thyroid problem.

One Perfectly normal TSH result.

Also

Anyone can Google search side effects of a medication at any time. Especially necessary in countries or situations where no patient leaflet is given - I would have thought.

Also

You are not giving full information like you gave on Pernicious Anemia Society forum.

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Anxiety maybe related to your thyroid issue. You still have scope to increase your dosage of thyroid medication I would see if you can have your dose increased as you still seem symptomatic.

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Hi.

Thanks for your reply.

I am not taking any thyroid medication. Never have taken any.

I only suspected that I had a thyroid issue, from my symptoms, so decided to get it checked out!

From replies to my previous posts, it seems that I do not have a thyroid problem, and that the local doc has misdiagnosed?

It appears that my symptoms may be the side effects from the long term use of the prescribed Clonazepam (to treat an anxiety disorder)?

Patez

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hellybaybee The OP has been prescribed drugs to treat alleged hyperthyroidism, and with those thyroid levels it would seem to be inadvisable to take them at all, and certainly not increase the dose.

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Oh, okay, I thought Hypo

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HiddenThis reply has been deleted

Hi Mary.

I do not take kindly that you "suggest" other things going on!

Either discuss it personally, but do not say publically "other stuff going on"!

I will be reporting you as a possible troll on here! Why make open posts when you are in personal communication with me already?

Sorry!

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I was refering to your post in PAS forum. Information on there, not any information given privately.

It helps, when posting, if the poster gives full information so that members can make informed comment. If they wish to try and help.

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What Thyroid issue ??????

Edit

This was my reply to your earlier reply - but it's come up in wrong place.

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patez Having followed your previous posts, including the one from some time ago, it occurred to me that your behaviour here could be indicative of your bi-polar condition if indeed that diagnosis is accurate; and/or side effects of the Clonazepam. Likewise, a number of the symptoms you describe could also be laid at the door of the Clonazepam. As I've said before, I do not think that your thyroid function tests results indicate hyperthyroidism in any way and if it were me, I would not be taking anti-thyroid drugs. Your FT3 level is below midway in range as it it, when optimally it might be expected to be in the top quartile - why would you want to deplete it further?

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Hi.

Yeah! It could have been the bipolar that "kicked in", when I "kicked off" with some of my bad behaviour on hear. It was an accurate diagnosis by the psych, based on my adverse reaction to anti-depressants. Depression deepened, and I became hyperactive, which was a very clear sign that I am bipolar. Anti-depressants are the worst thing you can take if you are bipolar! Classified as bipolar 2, because it is mild.

The clonazepam usually calms me down.

I thoroughly agree with you that my symptoms could be side effects of the clonazepam. Easy to confuse with thyroid symptoms, which are very similar.

I have not been taking any thyroid medication. Nearly did, until I took the advice on here not to take the carbimazole that the doc prescribed.

Patez

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I'm not sure if you are saying that you have a mild problem with your bipolar II, or that it is by definition, milder than bipolar I? If the latter, beware of that idea. It is certainly the case that the two conditions are generally differentiated by the occurance of hypo-mania and hyper-mania respectively; but the depressive lows of bipolar II can in fact, be lower and more longer lasting than bipolar I.

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Hi.

As it was explained to me by the psych, it was classified as "undefined", so it is a mild form of bipolar 2. It is normally defined on a scale, but the frequency of the high or low is the defining factor, I believe? Something to do with how many episodes you have over a given period of time, i.e. frequency of the mania?

Patez

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Ah, okay. The DSM 5th Edition contains the category of "Unspecified Bipolar and Related Disorder" relating to presentations in which symptoms are present that are characteristic of a bipolar disorder, which cause clinically significant distress or impairment in social, occupa­tional, or other important areas of functioning; but do not meet the full criteria for any of the disorders in the bipolar and related disorders diagnostic class. So, being unspecified, it doesn't fit, in particular, in either bipolar I or II categories. There are various features within the category, and severity is based on the number of criterion symptoms, the severity of those symptoms,and the degree of functional disability present. So someone might have severe manic episodes say, but not as often as is required for a diagnosis of bipolar I or II; or may have some but not all symptoms, etc.

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Hi.

So you know about/looked up the DSM 5th edition! I also read it! Interesting reading eh?

I hope it has answered your query?

Patez

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Yes, I do. I worked with homeless people for many years, amongst whom was a disproportionate number of those with mental ill health; so liaising with their mental health teams and Psychs, not to mention in extremis, arranging for them to be sectioned, was a key aspect. Then I re-trained as a clinical therapist.

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Underactive thyroid problems are known to cause higher cholesterol. It could actually be that your Statin is also upsetting you. My friends husband has been severely disabled by Statins, all his muscles melting away and almost unable to walk now.

The whole hypothesis is wrong, cholesterol is your friend. Dr Malcolm Kendrick has great books on this and films on YouTube...The Great Cholesterol Con is one of his books.

I had a lot of your symptoms until I started T3. Still not right but we have to educate ourselves to get well.

I would read up on all your medications, there could be clues. Big Pharma only cares about profits not interactions and side effects.

Edit - a link to your Statin drugs.com/cdi/rosuvastatin....

Good luck.

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Hi.

Sorry to hear about your friends husband.

I have personally not noticed any changes since starting the statins a year ago.

My slightly elevated cholesterol was the LDL (the bad one!). Levels are now OK, but doc wants to keep me on them.

From what I have now been told/read, it could be the Clonazepam that is causing my health problems? I will discuss that with the psych in my next appointment.

Thanks for your concern.

Patez

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patez, I assume your doctor will justify all the drugs you are on. The question is; do you want to put your faith in a profession whose only tools are pharmaceuticals. I would bet after seeing him/her you may be put on another pharmaceutical AND is there any exit plan for any of them. Do you want to accumulate more side effects?

I'm very sorry about the stress you are trying to cope with plus doing your job. Many here are doing the same thing. Did you know there are effective supplements for support to see you through. You could try Gaba or Seriphos and for Bi polar, high omega 3s but your doctor may be telling you to avoid saturated fats which are the ones you should be having but not the vegetable oils. I'll find references if you want.

Your doctor's actions are already questionable as are most conventional doctors for your conditions.

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I understand that some people have side effects from statins, so possibly some of the problems you are experiencing could be due to the Risuvastatin? Can you recall when you started to take it and whether this ties in with symptoms?

Have you tried giving up gluten to see if this helps?

As you change medications and/or diet, may I suggest you keep a diary or spreadsheet of symptoms and their severity, so you can try to work out what may be going on.

I have no knowledge of bi-polar, so can't comment on this.

Hoping your health recovers soon.

Mary

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Hi.

Started taking the statins in December 2017, but my "suspected" thyroid symptoms came on in December 2016. I haven't noticed any problems associated with the statins.

Going gluten free would be impossible to do, because gluten free products are extremely limited here in Oman.

Thanks for your concern.

Patez

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Patez. I once went gluten free without using gluten free products...I simply stopped eating anything that contained gluten.

Might be worth considering as a trial...just to see if it does make a difference.

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Hi.

I will think about it.

Thanks.

Patez

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I think you're right not to take carbimazole. Carbimazole raises TSH, and lowers T4 and T3. I wouldn't want my TSH to be any higher than 1.55, and lowering your T3 and T4 any further is not desirable...

You've said previously that antibodies aren't tested in Oman, is this just something your doctor won't test? Is there no way you can get them tested privately?

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Hi.

I have asked around, and no hospitals here in Oman have the facility to test for thyroid antibodies.

I go on holiday to Thailand in 8 weeks time, so I might get them tested there, depending on cost! I am sure they will be able to do the antibody tests there?

Thanks to everyone on here that advised me not to take the carbimazole, because it would probably have made me even sicker than I am!

Patez

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We can get antibodies tested by a home test over here - are there no similar facilities there? It's crazy, because I really do think you have autoimmune thyroid disease (it explains why you'd have both hypo and hyper symptoms).

You could take a gamble and assume you have antibodies, and follow a diet to bring them under control (which would relieve a lot of your symptoms)?

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I haven't kept up with your posts, sorry, but just wanted to mention a couple of things.

If you ever want to find information included in patient information leaflets in the UK, try this website :

medicines.org.uk/emc

EMC stands for Electronic Medicines Compendium.

For info supplied to patients in the USA about their drugs try this site :

drugs.com/

...

I noticed that you mentioned anxiety a few times in this thread. One source of problems with anxiety is the stress hormones, cortisol and adrenaline. If you have often been a mildly stressed individual, and then a seriously stressful event came along your stress response and the associated hormones may have gone completely haywire. I don't know any way of testing adrenaline levels or how to reduce it, but cortisol levels can be measured, and reducing/increasing them as appropriate with over-the-counter supplements is possible.

Doctors test cortisol with either a random (i.e. at any time) cortisol blood test (usually useless), or an early-morning (before 9am) cortisol blood test (sometimes helpful). Patients who do their own monitoring of health issues use saliva testing for cortisol if they can. Saliva testing is far more informative than blood testing, and since a full (good) test uses samples at 4 points during the day as well as testing your DHEA it can tell you about your cortisol response in far more detail than a single blood test.

Having incorrect levels of cortisol for you has knock on effects on thyroid levels and could give you symptoms associated with thyroid dysfunction. See the first post on this thread from another forum and you can see it mentions cortisol several times :

forums.phoenixrising.me/ind...

...

Another source of anxiety is low vitamin and mineral levels. Low vitamin B12 or folate can cause anxiety. In my own case low iron causes anxiety. There may be some people who feel anxiety from other low nutrients.

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I prefer the official FDA site for USA medicines:

dailymed.nlm.nih.gov/dailymed/

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Hi patez. At first glance at your labs it's clear that both of your thyroid hormones are much too low, ie hypothyroid. So I calculated their percentages. Your FT3 is only 43% of range and your FT4 is only 30% of range. No wonder you don't feel well and have all of those hypo symptoms! Those low levels of thyroid hormones will make you feel very sick and cause symptoms. These low levels are obviously not optimal levels for you to be symptoms free. Taking carbimazole slows down the thyroid and makes it become hypo. Do you have your labs from when a doctor diagnosed you as hyper?

Your TSH is good/low, but this does not mean your thyroid is functioning correctly. TSH is not a thyroid hormone anyway, so it is not a reliable gauge for thyroid status. A potential cause of low TSH along side low FT3 and FT4 is a pituitary or hypothalamus malfunction. This is called Central Hypothyroidism.

I would feel like complete garbage if I had low thyroid hormone levels like yours. I have been that low and even lower than what you currently are in the past, and I felt so sick, could not function or work, just as you are experiencing. I feel ill and have hypo symptoms if my FT3 is not between 65% and 75% (much higher and I get hyper symptoms), and if my FT4 is not at 60%-70% (much higher and I get hyper symptoms). If my levels slip below these percentages I am so sensitive (as many people are) to my thyroid levels, that I know it right away, immediately run tests, and my tests show my levels have decreased. That's when I increase my meds to bring thyroid hormones back up to be as close to symptom free as possible.

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Hi.

Thank you so much for that really nice reply.

I suspect that it may be hypothalamus related, mainly due to the extreme heat intolerance?

The hypothalamus is the bodies thermostat?

I will start levo asap, and keep a close eye on the TSH, T3, T4.

The test results I posted were what the local doc diagnosed me as being hyper, which I suspected was wrong, which was why I did not take the prescribed carbimazole!

Patez

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A brilliant doctor I followed for years advised people on any type of let's call them "brain" drugs to use them only during the crisis. Long term use changes your own brain chemistry.

I think that is what happened to you and by doing so you are creating new conditions.

Did I read that you did stop the clonazepam at one point?

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Hi.

Yes I tried twice to come off both the valium, and more recently the clonazepam, (not taking both at the same time) and instantly went into remission and ended up in A&E with severe panic attacks (chest pains).

It could very well be that the possible hypothyroidism is the main cause of the anxiety/panic attacks?

As things stand, I need the clonazepam!

Can't manage without it, but I think I may found the root problem, hypothyroidism?

Treat that and I may then be able to come off the clonazepam?

Worth a try eh?

Patez

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It's hard to be certain of anything and you should probably listen to a doctor who understands the drugs you are taking I hope. If the drug you take is inhibiting TSH even though your thyroid is working well, it will not be told to produce the necessary thyroid hormones. It will be interesting to see if he will acknowledge any of that and offer to supplement T4 or T3.

I would say you are not hypothyroid but you have an associated lack of thyroid due to interference from another drug. So best wishes, and it would be very nice if you could reduce the clonazepam once you start. And if you can get off the clonazepam perhaps you can also then stop the thyroid hormone.

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