Banned?

[patez]

Hi.

From a previous post on here, I was told that I was banned from further posts, because I made some ill informed derogatory remarks, which I apologise for, but I am desperate to try and seek an answer to my health problems.

So I thought I would try and see if I have been banned!

I have been through years of hell, trying to figure out my health problems, and everything points to Hyperthyroid, by symptoms, and discussion with other people who had suffered exactly my health problems, but never got treatment because the TSH, T4 and T3 were "in range"?

My latest results are free T3 2.62 pg/ml (range 1.40-4.18). Free T4 11.39 pg/ml (range 8.90-17.20). TSH 1.55 mIU/L (range 0.30-4.5).

My symptoms are heat intolerance, insomnia, anxiety, hand tremors, tiredness, poor memory and unsteady gait.

ANY help or advice will be greatly appreciated, because I am desperately trying to find out why I am so ill!

I have been taking daily B12 injections, and taking folic acid, and now also tried Iron and Vit C supplements, with no effect (apart from the tingling fingers now being "cured", but still suffering badly with poor memory, loss of coordination (can't even sign my name properly?), unsteady gait, feeling tired all the time, and uncontrolled left fingers twitching?

Help!

Patez

[RedApple]

patez,

I don't recall you being 'banned' from this forum, but if you were, the restriction must since have been lifted again. Otherwise you wouldn't have been able to post this

The symptoms you describe certainly could be attributed to a thyroid issue, but, in my opinion the TSH, FT4 and FT3 results you've quoted really do not suggest either over or under active thyroid. Presumably you have been investigated by a doctor for other possible causes of these debilitating symptoms?

[patez in reply to RedApple]

Hi.

Thanks for your input and your support.

I had hoped that it was thyroid, because that is fairly easily and successfully treated (from what I have read on here).

Docs are flummoxed! Putting it all down to anxiety!

I have been prescribed 0.5 mg Clonazepam daily, put on statins for high cholesterol and told to take regular B12 injections.

Nothing, so far, has helped much!

Trying B1 supplements now because I read 1 report of B1 deficiency causing unsteady gait and coordination problems.

HAPPY 2019 (I hope!).

Patez

[Heloise]

Well I don't think you are banned You certainly are not hyperthyroid with those results and the active hormone FT3 at 2.62 is too low so we would say you may be hypothyroid. Your brain needs T3 so that's a problem. I don't know if you have an autoimmune problem since your TSH isn't as high as it normally is with those results. Have you had an antibody test? You are correct, though, doctors would say you are within range on all counts and that is the problem we all have.

If your anemia is not reconciled even your own hormone FT4 won't work well even if it were sufficient. Your doctor may think your hormone levels will do better once the other factors have improved. One poster said that she couldn't raise her iron levels until she added manganese. I don't know if that would work for you. Others suggest eating liver.

It's important that your digestion be thorough but often inflammation in the gut isn't good enough to break down minerals and amino acids. Taking HCL and digestive enzymes may improve your overall status.

When we have inflammation your brain will suffer as well. Poor handwriting is also a sign. Can you get another doctor?

[patez in reply to Heloise]

Hi.

Thanks for your info and support.

I will see another doc during my next holiday. I live and work in Oman, and go to Thailand for my holidays. Docs there are a lot better than here! I will have my Vit levels checked!

Hate liver! LOL!

I do have PA, so the lack of intrinsic factor could be the reason for the lowish TSH and T3?.

I don't have a cold intolerance (which would point to hypo?). In fact I suffer from the exact opposite, which in heat intolerance (which would point to hyper), but as you and other well informed people have previously said, my thyroid test results do not show hyper?

Hopefully 2019 will be a better year for me?

Patez

[Gigi216 in reply to patez]

This summer when my thyroid levels were under the ranges I would get heart palpitations and very high blood pressure in the heat. You can have heat intolerance with low thyroid.

[JCMK in reply to patez]

Hi, in one of your last posts, approx 3 months ago, it was explained that you can experience cold or heat intolerance when you are hypo.

I hope you finally find some answers in 2019.

Good luck, JCMK

[Mary-intussuception in reply to patez]

I also have heat intolerance as well as cold intolerance. I have Hypothyroidism.

[rjb112]

"hand tremors.....poor memory and unsteady gait."

Maybe a neurologist consultation could shed light on the situation.

If it were me, I'd try that to see if a neurologist could help to figure out what is going on.

Best wishes

[patez in reply to rjb112]

Hi.

Thanks for the advice and support.

I will discuss this with my psych when I next see them in 8 weeks time.

Hopefully 2019 will be a better year for me.

Patez

[rjb112 in reply to patez]

Wishing you the best ! It's certainly not easy to get to the root of these issues, and can be very frustrating.

[Naomi8 in reply to rjb112]

yes,I second this.I would want to rule out MS & Parkinsons to put my mind at rest.Hope you will get an MRI scan.

My GP has insisted I go to neurology(appointment in Feb)Scared stiff but better faced.

[patez in reply to Naomi8]

Hi.

I will be seeing a neurologist in 8 weeks time.

I do not think my tremor problem is Parkinson's, because it only happens when my hand is in use. That is what usually rules out it being Parkinson's, because with Parkinson's the tremor is constant?

More likely to be essential tremor, for which beta blockers have shown to be very effective treatment.

My "suspected" thyroid problem looks more likely now to be hypothalamic dysfunction?

Patez

[Heloise in reply to patez]

I agree with that. Stress perceived by the hypothalamus will be addressed by the adrenal glands and send out cortisol. Often we autoimmune people get stuck in the fight or flight mode or the sympathetic nervous system. I don't think some of those tests actually show this but a saliva cortisol test would. This state will push your thyroids down. (Heat intolerance is part of hypo just as cold intolerance.)

Working on stress reduction whether it be from emotional, chemical or lack of sleep and supporting the adrenals with supplements just might work IF you can get the anemia checked. I go back to my suggestion for stomach acid. If your gut is inflamed which is showing up with your deficiency, your brain is also inflamed.

Your stomach lining cannot produce enough acid in this situation and actually can cause reflux in this condition.

If you have the discipline, there are biofeedback devices for personal use.

[patez in reply to Heloise]

Hi.

More good info. Thank you.

From extensive research today, I think that a TRH test will be a better indicator?

Quote from Cancer UK:

Hypothalamic Hypothyroidism.

When low thyroid hormone levels trace back to a failure of the hypothalamus to secrete Thyroid Releasing Hormone (TRH), which in turn stimulates the anterior pituitary to produce TSH, the resulting hypothyroidism is hypothalamic hypothyroidism, also known as tertiary hypothyroidism. Hypothalamic hypothyroidism can be idiopathic or result from demonstrable hypothalamic disease.

Again signs and symptoms are the same as those for other types of hypothyroidism.

Treatment involves replacement of thyroid hormones and, in some cases, surgical removal of a precipitating tumor.

The use of thyrotropin releasing hormone (TRH) stimulation in the diagnosis of central hypothyroidism has decreased substantially, due to the greater sensitivity of the TSH analysis. The use of TRH stimulations is still recommended in the diagnosis of congenital central hypothyroidism in neonates, so that appropriate therapeutic intervention can be undertaken quickly. When TRH stimulation is used, normal patients respond with a doubling of their TSH in about 30 minutes after injection of synthetic TRH. A patient with hypothalamic hypothyroidism will show a normal response, but the peak is delayed to 45- 60 minutes after injection. Patients with pituitary hypothyroidism will not respond with an increase in TSH. Patients with primary hypothyroidism will show an exaggerated TSH response.

You are very correct in stating that stomach acid plays a very big part in any type of autoimmune disease. I have PA, so my stomach does not have enough intrinsic factor to absorb B12!

Stress? Oh please don't get me started on that! LOL! I work in Oman, and believe me, it is not an easy job!

But we are sharing what could be vital information for other people to get the help they need.

Personally, I will seek private consultation with both my Thai psych, and now probably a Thai neurologist?

The really strange thing, after all my personal research is that I do appear to need thyroid medication, but which one is the question yet to be found out and answered!

Probably levo?

Beta blockers also to treat my peripheral neuropathy?

Patez

[Heloise in reply to patez]

I have been leaning toward functional medicine rather than some of these specialists over the past twenty years of following functional doctors. Lately anything John Bergman relates is golden. His mantra is that your body is very intelligent and is reacting correctly in any situation. Pharmaceuticals often interfere with that rather than encouraging it and it is never a deficiency of some pharmaceutical. Why do you need a beta blocker? Your cortisol is probably inducing that because you don't have enough thyroid hormone. How is that helping you?

He taught anatomy and knows nerves because he is a chiropractor. I know more about Hashimoto's than central hypo but that test seems reasonable in your case. Some people have a benign tumor on the pituitary. Why don't you post another question (let's get rid of this banned thing and ask about the relevancy of the TRH test. Others may be more help.

This is a good one by Dr. Bergman but also look at his thyroid/adrenal videos if you have time. youtube.com/watch?v=3aepZER...(Not working as expected?)

[Heloise in reply to patez]

In answer to you Levo question. Levo is T4 only. You cannot use T4 until it becomes T3. This conversion relies on good ferritin/iron levels which you probably don't have under the circumstances. You can take a natural desiccated like Armour which contains a 4:1 of T4 to T3. Your conversion rate going by this:

My latest results are free T3 2.62 pg/ml (range 1.40-4.18). Free T4 11.39 pg/ml (range 8.90-17.20). TSH 1.55 mIU/L (range 0.30-4.5).

You ARE converting somewhat. You can go through some math and see how well but some just take T3 which is a synthetic but does not require conversion. When people do NOT convert well, FT4 is usually much higher than FT3. The adrenals can use T4 to make REVERSE T3 which is another part of the test that can be helpful.

This explains but labs are usually U.S. or UK. stopthethyroidmadness.com/l...

[gigitheweegie]

I was thinking food related too... but more in the direction of a gluten intolerance perhaps?

[noenergy]

Sorry reallyfedup123, but what pans are more suitable for cooking then?

[Naomi8 in reply to noenergy]

Anything without aluminium or a non-stick coating eg stainless steel,enamelled cast iron,cast iron....

[noenergy]

Thanks

[MaisieGray]

"In fact I suffer from the exact opposite, which is heat intolerance (which would point to hyper)" - no not necessarily, many of us have overheating problems. One can continue to mislead oneself by absolutely categorising many thyroid-type symptoms as being evidence of only an over- or under-active thyroid, because so many can be evident in both conditions. But I agree with others, there doesn't appear to be any evidence of hyper-activity in your blood test results. Regarding unsteady gait and hand tremor; my own is caused by essential tremor, for which I take beta blockers. Has that been considered by your Drs?

[patez in reply to MaisieGray]

Hi

Thanks for your input.

I will ask the doc about essential tremor, because my symptoms are associated with essential tremor (as opposed to Parkinson's).

Probably better to see a neurologist though, which I intend to do in 8 weeks time.

I do take clonazepam, but I have not actually noticed if the finger tremors decrease after taking it?

As you say, beta blockers are the standard treatment for non Parkinson's related essential tremor.

Patez

[MaisieGray in reply to patez]

Just a point, as a benzodiazepine, Clonazepam can itself, cause memory problems.

[patez in reply to MaisieGray]

My psych says that the only real side effect of Clonazepam is slight drowsiness, and that it should actually improve my poor memory!

In case you are wondering, I used to take Valium, but he switched me to Clonazepam because it is not so sedating as Valium.

I am prescribed it for anxiety, and to help with my bipolar 2!

Patez

[Saya85]

Hi

Hopefully someone will correct me if I'm wrong but seeing as your TSH is quite low in comparison to your poor t4&T3 results.... Could this indicates central hypothyroidism (i.e a problem with the pituitary rather than thyroid?)

Might be worth looking at in conjunction with neurology..... Without scaring you if there is a neurological issue causing your symptoms it stands to reason it could be pituitary related or even a benign tumour which is quite common and often located near the pituitary

Might be worth asking GP to check things like prolactin and other hormones that may indicate a pituitary issue. MRI scan may be next step

[patez in reply to Saya85]

Hi.

Thanks for your thoughts.

Your suggestion about central hypothyroidism led me to do a lot of research. It looks like it would be more likely to be a problem with the hypothalamus (effecting the pituitary), taking into account that I do not suffer with the headaches that a pituitary problem usually causes?

Hypothalamic disorder symptoms are actually very close to my health problems of poor memory, body temperature (overheating) and odema?

I will be going to see a neurologist in 8 weeks time, so things might become clearer then.

As MaisyGray has stated above, essential tremor is another one of my health issues, again really needs a neurologist.

Patez

[Saya85 in reply to patez]

Ah yes that as it. Central and secondary can be pituitary or hypothalamus related

Well if that fits your symptoms it certainly could be a possibility.

Hope you get some more answers from neurology

Good luck

[Cooper27]

Have you ever had your antibodies tested? I had very similar results to you, with lots of thyroid symptoms as well. I had to pay for a private test for antibodies, but it showed they were elevated, and we realised why I was feeling the way I was. Antibodies suggest autoimmune thyroid disease, which ultimately results in hypothyroidism, but you can have symptoms for many years before your thyroid is eventually pushed to show abnormal test results. The good thing is, the symptoms can be helped by diet and supplements.

You can have both hypo and hyper symptoms at the same time with autoimmune disease (I'm heat sensitive, but have problems with weight gain too)

[patez in reply to Cooper27]

The antibody tests are not available here in Oman!

From all the comments on here, I think, after many hours of further research, that I may have a Hypothalamic disorder, which would effect the pituitary, and possibly give me central hypo?

I was unsure about my very recent TSH, T4 and T3 all being low, because at least 1 of them should be high for a normal thyroid function, as I understand it?

Patez

[Sleepymoley]

Hi, have you been diagnosed with anaemia? Only asking as I had similar problems for years after my hypothyroidism diagnosis and it finally turned out that I had haemochromatosis (iron overload). May be worth getting your ferritin levels checked just in case as the symptoms are very similar to anaemia + hypothyroid. It may be a long shot as I don't know your ethnicity, but is very common in northern Europeans.

Good luck anyway

[patez in reply to Sleepymoley]

Yes, I was diagnosed recently with iron deficiency anaemia, but that was totally unrelated!

I actually developed Steven Johnston's syndrome 8 weeks ago, after being prescribed Lamictal for bipolar! Nearly killed me! I was titrating in accordance with the psych instructions, but the next day after hitting the target dose of 100 mg, I fell very ill. Went straight to the local A&E, with a very swollen and red face, BP of 168/120, resting heart rate of 160, and? They told me to take 1 day off work! LOL! They had no idea what was wrong! Luckily, the psych had told me to immediately stop taking the Lamictal if I had signs of Steven Johnston's, and that hospitalisation should have been done, with an IV course of corticosteroids, and that I was very lucky to actually still be alive when I saw him 2 weeks later, because life expectancy from Steven Johnston's syndrome is 2-3 weeks, without immediate treatment! Basically, my liver and kidneys had completely shut down, and that caused my severe anaemia!

Currently taking loading doses of oral Iron supplements (135 mg ferrous sulphate) 2 tablets twice a day, and 500 mg Vit C to help the iron absorption.

Under control now!

I have a problem with job security, if I "push" things a bit too far with requesting help for my health problems, so I have not asked for ferritin levels to be tested!

As you ask, I am British but living and working in Oman. I seek medical healthcare in Thailand during my holidays.

Just struggle in between holidays!

From all the big help and advice on here, I think I may know what the problems may be, and I will investigate that in 8 weeks time, on my next holiday to Thailand.

For your info, and anyone else that is following me, I think I have 2 separate problems, one of which could be thyroid related, and that is Hypothalamic dysfunction, which could cause the pituitary to cause central hypo?

The other problem, with the poor memory, lack of coordination, twitching left hand fingers may be essential tremor, treatable with? Thyroid medication! LOL!

Vicious circle!

Patez

[MaisieGray in reply to patez]

I'm not sure why you would think that essential tremor is treatable with thyroid medication - despite being optimally treated for hypothyroidism I nevertheless developed and continue to have essential tremor.

[patez in reply to MaisieGray]

Hi.

I will try and explain.

The essential tremor Mayo Clinic website states:

Laboratory tests.

Your blood and urine may be tested for several factors, including:

•Thyroid disease

That is why I have associated essential tremor with thyroid problems, because the Mayo clinic essential tremor website "suggests" thyroid disease as being a possible cause, and a necessary test to be carried out?

Isn't it a minefield of info to take in eh?

But I thoroughly agree with you that the Mayo Clinic essential tremor website does not state thyroid medication as being part of the treatment, but it mentioned thyroid tests!

Where did I get the idea of essential tremor being treatable by thyroid medication?

I have no idea!

I just linked the thyroid test as being a possible cause of essential tremor?

My apologies if I have misled anyone!

I just want to get well again!

But it is very confusing!

One step at a time!

I am encouraged that the beta blockers helped your tremors.

It is something that I will follow up on, when I get to see a neurologist.

Patez

[MaisieGray in reply to patez]

I've had a look at the site you mention, and it is a little unclear, but I read it as those are exclusionary checks (for thyroid disease, metabolic problems, drug side effects, alcohol levels, levels of chemicals that may cause tremor) so that if all those things which may cause tremor (but not essential tremor) are ruled out, you are left with a diagnosis of essential tremor.

[patez in reply to MaisieGray]

Hi.

I bit the bullet today and went to see another local doc! Took my thyroid test results for his opinion.

We discussed all my health problems!

His 1st reaction was that my thyroid test results were "definitely" Hyperthyroid! To be more specific, it was subclinical hyperthyroid, but taking all my symptoms into account, he said I was definitely hyperthyroid. He has prescribed 5 mg Carbimazole to be taken 3 times daily.

He then "tested me" for possible Parkinson's, because of the left finger tremor, but immediately ruled that out and diagnosed essential tremor. Prescribed 40 mg Propranolol HCL, to be taken once daily.

He did mention that the essential tremor could be related to the hyperthyroidism though, so this is a trial!

I have noticed that other people have posted that they have been prescribed both thyroid medication and beta blockers, as they seem to work well together?

Anyway! Fingers and toes crossed that I will feel better soon!

Patez

[Jose651 in reply to patez]

Hi patez,

Well done for pushing forward.

Maybe you could make a New Post (copy what you wrote today) so that the members who replied to your original post would be able to see your latest news.

Good health.

J

[patez in reply to Jose651]

Done!

[Jose651 in reply to patez]

👍☘️

[patez]

I want to say a big thank you to all of you who have replied and supported me.

I have now sought a 2nd opinion, from another doc, and the outcome has been that my thyroid test results were "unusual", but definitely hyperthyroid? As he explained it, it was unusual to have the TSH, T3 and T4 all low in range? At least 1 of them should have been high? In actual fact, he did say that I was "subclinical hyperthyroid", but with all the symptoms of being hyperthyroid? Prescribed 5 mg Carbimazole, 3 times daily.

I was given an examination for the finger tremors, and unsteady gait, and Parkinson's was ruled out, and was diagnosed with essential tremor. Prescribed beta blocker, 40 mg Propranolol once daily.

Fingers and toes crossed!

Patez

[Jose651 in reply to patez]

Hi patez,

I mean start a completely New Post. 👍

Unless members have clicked on 'follow' they won't see your last 2 messages.

I did click on ' follow' and have been alerted that someone (you) , had added a 'thread' to your original post of 3 days ago.

It is a bit confusing at the start. Feel free to ask anything.

J

[Mary-intussuception]

Have just seen your new post. These are not Hyperthyroidism results.

I would ask for a referal to an Endocrinologist before taking the medication.

Hopefully someone from admin with knowledge of the medication you have been prescribed will reply - but I wouldn't take it without reason being given.

Why are you on daily B12 injections? What was your B12 blood test result?

Have you ever had Folate tested?

Ever had Vitamin D tested or Ferritin?

Definitely asked for Vitamin D test asap.

Have you had an Ultrasound scan of your Thyroid?

Why do you think you have an Overactive Thyroid? Have you had any Thyroid Antibodies tested?

Have you lost a lot of weight?

Are you hyperactive?