Hypo thyroid mystery : Is there a cure?

[thedeep]

Hello Brothers and Sisters,

I am new here.

I am writing a long post, hope you will have some patience to read through it.

I am 36 year old male from India. My case is weird since so many doctors and specialist couldn’t figure out the symptoms that are mentioned across this site (in various other posts) and it moves back to 2011 where my TSH was a little high (5.x) and it was ignored (found in routine annual medical health check). Then, following years also showed an increased cholesterol level (high range) and again TSH was silently ignored. (6.X) It’s as if the general physician never cared about it and I being ignorant about TSH just moved on. Parallelly I started having frequent stomach upsets and I just took the prescribed medicines for the cure. Eventually the stomach issues enlarged and after a series Colonoscopy, endoscopy etc. doctors told me that I have IBS (sensitive gut). They asked me stop Whey protein and other supplements(Vitamins, Minerals etc.) which I regularly took as a part of my gym routine and prescribed me some medicines (which never helped).

It was during 2014 the IBS was at its peak, I was having severe bloating, diarrhea, acid reflux etc. and I started with a chest pain on the left side. Again, on my routine checkup I was told that I was having a pleural effusion. I went to the top doctors and most of them prescribed tuberculosis medicine without even running a diagnosis for TB. Finally, I went to a doc and asked him forcefully to run a series of tests on blood, sputum, drained liquid culture, skin test etc .and everything came back negative for tuberculosis. So, I never took TB medicine and eventually I cured myself by Ayurvedic medicines (which works for me most of the times). There were 2 doctors who were fair enough to go against the norms and tell me that, 1. It might be eosinophilic pleural effusion (eosinophil count = 4X in the culture and blood) 2. It might have happened because of the increased acid reflux while asleep, that it aspirated to lungs and caused an infection and finally, CT scan revealed a calcified granuloma of 1.3 mm in the left lung and the case was closed telling me go live with it!

After this incident, my symptoms like, knee/back pain, brain fog, insomnia, fatigue, anxiety etc. increased a lot. I can’t keep count on how many specialists I visited and most of them told me that I am taking too much of stress and I need to consult a psychiatrist. It’s at this point I lost it with the so-called doctors and started doing my own research. Ayurvedic medicines have always helped me bring TSH down.

I almost took control of my IBS by isolating many food items from my regular diet like Gluten for example and switching to A2 Milk and products and going Organic! (also following Ayurvedic detox methodology called Panchakarma). But I still suffer from diarrhea/constipation.

I finally managed to argue with an endocrinologist and get Anti TPO test done last year. Till then every single one of them told me that being a Male its OK to have TSH at levels of 6-8 and never come back again till it crosses 10.

My Anti TPO came at 800+ and the doctor prescribed me Thyroxine 0.25 mcg and didn’t say word more. I knew that this is the regular protocol and he won’t look beyond that. I even asked if I have an auto immune dis order for which he just said, “go take this medicine”.

Here is a brief history if you are interested in chronological order:

9/2010: T3: 1.03 ng/ml, T4: 6.95 ug/dl, TSH: 2.73

12 / 2011: TSH: 5.29

5/2012: T3: 0.80 ng/ml, T4: 6.07 ug/dl, TSH: 4.30

2/2013: TSH: 4.0, IBS Starting stage

2/2014: Pleural Effusion, Very High Eosinophils, Severe IBS

4/2015: TSH: 6.4, FT4: 1.51

2/2015: TSH: 7.75

6/2015: TSH: 5.3

12/2015: TSH: 4.99

4/2017: TSH: 6.02

11/2017: Anti TPO: 801, Prescribed Thyroxine .25mcg (didn’t start it till now)

2/2018: T3: 73 ng/dl, T4: 5.10 mg/dl, TSH: 4.02 (Normal) (Was on Ayurvedic medicines)

4/2018: Anti TPO: 349, TSH: 3.3 ( Started with: Selenium(200mcg), Meconerv Forte (Alpha Lipoica cid, Benfotiamine, Inositol, Mecobalamin and Pyridoxine), Magnesium

)

Other historical tests:

ANA: Negative, Cholesterol: Always on the higher side (High LDL, Low HDL, most of the panel is above normal), Uric Acid: Normal, S. Cretainine: Normal, RA test: Negative, Colonoscopy: Normal, Endoscopy: LES LAX, H.Pylori (Not seen), Stool routine: Bacteria: +, Cysts: Ascaris L

Blood pressure: Keeps varying Normal to High, CT Scan: Head/Neck: Normal, USG Neck: Normal, 3T MRI Whole Spine: Normal, USG Abdomen: Normal

Diet: Strict vegetarian, no processed foods, no sugary foods, just nothing from the shelf!

Now on 3 meals a day homemade. Gluten free from past year.

Issues:

No matter how much rest I feel out of energy (especially in the morning, have struggle waking up form bed, there is always this fatigue, joint pain, sleep issues, memory issues, brain fog, and can’t concentrate on anything. These days I have become so much emotionally unstable, severe anxiety/depression issues, cant even sleep regularly.

Here are my questions and I really hope you will answer them:

1.Do I need any more tests to drill down to the exact issue? Like, Food Intolerance test, Leaky gut test? (Amazingly the docs won’t prescribe these even when I ask them just like they did in the case of Anti TPO and they just prescribe some medicines)

2.Currently do I need to start with Thyroxine? Is this the reason for my anxiety/sleep/fatigue issue? Can I take it for a short interval and then leave it afterwards? I just felt not right taking it because I have seen my wife taking it and the dosage stepping up from .25->.50->.75. I thought I can control this using food and proper supplements. Correct me if I am wrong.

3.Should I continue with supplements like Selenium, Magnesium, Zinc etc.? If so how long, is there anything else that I should add? (like Glutamine, DHEA)

4.Dairy, Rice/lentils are the major part of my daily diet. Any additions / deletions recommended?

5. Is there anything related with adrenal glands that might be causing these symptoms?

[shaws]

I am really sorry about your horrible journey when no doctors knew how to diagnose and you were left to get on with your health as best you could. With a TSH of 6 you are hypothyroid.

Going gluten-free will help reduce the antibodies and they attack the thyroid gland until you are hypothyroid and the proper name is Autoimmune Thyroid Disease - called Hashimoto's.

The aim of taking levothyroxine is to bring the TSH down to 1 or lower. 25mcg of levothyroxine is an incremental dose. Starting dose is 50mcg with 25mcg of levo every six weeks until your TSH comes down to 1 or lower and some might need it slightly suppressed.

Everything in our body from head to toe is affected by thyroid disease so it is important that you get adequate dose. If either pulse or temp goes too high drop to previous dose and that should be suitable.

Blood tests for thyroid hormones have to be at the ver earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards. This helps the TSH to stay at its highest as that's all doctors seem to take notice of.

You should take levothyroxine when you get up with one full glass of water and wait an hour before eating. Food interferes with the uptake.

Your doctor should check B12, Vit D, iron, ferritin and folate. Everything should be optimal.

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

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

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

We cannot stop taking thyroid hormone replacements as we have a serious condition if untreated and it is a life-long journey and taking T4 (levothyroxine) daily. It is an inactive hormone and has to convert to T3 (liothyronine) which is the only active thyroid hormone and it is needed in all of our T3 receptor cells. Heart and brain have the most T3 receptor cells.

I hope you feel better soon and I am sure you eat well. When you get copies of your results always quote the ranges as it makes it easier to comment.

[thedeep in reply to shaws]

Thanks for the wonderful info and the links. If I start with a Levo of .25mcg (say) and if I hit a TSH of 1 ( now its at 3) do think this will work out? When my wife started from .25mcg she reached a TSH of 0.9 in 5 weeks. (She was at 5.X). So this assumption.

When I reach a TSH of 1 (lets say) should I just continue with the same dosage? (assuming I am taking .25)

Thanks for your time.

[Angel_of_the_North in reply to thedeep]

25mcg of levo may make you feel worse, as it is just enough to let your thyroid to take a rest, but not enough to replace the hormone it was making. The usual starter dose is 50mcg. it is impossible to tell how it will take to get your thyroid hormone levels to a good range - everyone is different. What you are aiming for is free t4 and free t3 in the top quarter of their ranges and TSH wherever it ends up when that has been achieved (usually between 0.2 and 1, but could be lower). Make sure not to eat any soy.

[thedeep in reply to Angel_of_the_North]

Thanks for your suggestion.

[greygoose]

Hi thedeep, welcome to the forum.

I will try and answer your questions, to the best of my ability, but I am not medically trained - no-one on here is.

1) You have Hashi's. Hashi's is an autoimmune disease that doctors know nothing about - probably why they evade your questions! With this disease, your immune system slowly destroys your thyroid, mistaking it for the enemy. After an immune system attack, the dying cells dump their stocks of thyroid hormone into the blood stream, causing levels of FT4 and FT3 to rise steeply, and therefore the TSH drops. This is a temporary 'hyper' phase which we call a Hashi's flare. In time, when the extra hormone is used up or excreted, the levels of your Frees will drop again, the TSH rise, and you will be hypo again - only more so, because there will be less thyroid now to make hormones.

You've had the antibodies tests and know that you have Hashi's, so there's not really much more you can do. I've never heard of anyone finding out what really caused there Hashi's, and there are no other blood tests that I know of, to do with Hashi's. So no point in beating your head on a wall of doctors.

2) With a TSH of over six, you certainly do need to start taking the levo. Except that 25 mcg is too low a dose, and could very well make you feel worse. Can you go back to your doctor and insist he puts you on 50 mcg, which is a normal starter dose?

No, you cannot take it for a short while and then leave it. It's not aspirin! It is thyroid hormone replacement, replacing the hormone that your thyroid can no-longer make enough of, and which you need to live. It is perfectly normal to have an increase of 25 mcg every six weeks. With hormones, you always have to start on a low dose and increase slowly until the symptoms are gone. But, that is not likely to be until your TSH has reached zero, as you have Hashi's. That will take quite a while, I'm afraid. And, it is perfectly right and normal to take it. It's not a drug. You absolutely cannot control it with diet and supplements. And if you try, you will make yourself very ill. You can only replace a hormone with a hormone, not a vitamin.

3) You should continue with your selenium, magnesium and zinc. Forever, probably. With short breaks from time to time.

You should also get your vit D, vit B12, folate and ferritin tested, and build up your supplements according to the results. Only take what you need.

You can try glutamine, if you like, but it doesn't suit everyone.

Do not take DHEA without first getting tested. It is a hormone. One does not take hormones like sweets.

4) For your diet, eat what agrees with you. But, a 100% gluten-free diet might help, if you're in the habit of eating gluten. I don't imagine you eat soy in India, do you? If so, you need to avoid that. Otherwise, enjoy!

5) You could certainly have low cortisol, yes. But, you would need to get it tested to find out. I have no idea what tests are available to you, but the best one for cortisol is the 24 hour saliva test. Cortisol blood tests are not very reliable.

Hope that helps.

Oh, and I forgot to say: no, there is not a cure.

[thedeep in reply to greygoose]

Thanks so much for the reply. I forgot to mention that I had done B12 and Vit D tests. B12 was just above the normal and Vit D was in insufficient range, for which I supplemented with 60000 IU once 15 days (as per the doc's suggestion) Folate and ferritin is something I didnt test, and definitely will get it done. I had done S-Cortisol test couple of years ago which was above normal. Will give it a shot again now.

As per diet, I am 100% gluten free now. Soy, I never liked it, so never even tried, though many use it here which comes in the form of picketed drink (soy milk) and also soya chunks (used in curries).

So with my recent A-TPO at 340 and TSH - 3.3, do you recommend that I start with Levo?

(I am planning to start with a low dose of .25 to begin with.)

I know its a dumb question still just for a confirmation, since the last time I consulted a doc she was of an opinion that "since its (TSH and TPO) coming down, why do you wanna start it now? You should have started it back then when it was more".

I am trying to improve my gut health in parallel, so that I can rewire my immune system and there by controlling the auto immune trigger. Not sure this can be waste of effort but yet I am giving it a try.

Thanks again for your time.

[greygoose in reply to thedeep]

That's not enough vit D. If yours is insufficient, you need about 20 000 every day!

Yes, you need to start levo now. You are hypo when your TSH hits three. Plus, taking the levo - when you take enough of it, which will be a lot more than 25 mcg! - will slow down the immune system attacks.

"since its (TSH and TPO) coming down, why do you wanna start it now? You should have started it back then when it was more".

What a dumb thing to say! lol Does she thing they are going to continue to go down until they become normal again, and stay there? Ain't gonna happen! Antibodies fluctuate all the time, and the TSH may come down, but it will go up again, sure as eggs is eggs.

I am so disappointed to hear that soy has hit India, too. I thought that might just be one country that escapes the soy plague! With your wonderful rich culinary history. I know it's supposed to be a source of protein, but it's really not a good once, with many disadvantages to it.

[Sus64 in reply to greygoose]

I've been wondering, Greygoose, are the recommended optimal thyroid levels the same for men as women?

[greygoose in reply to Sus64]

As far as I know, yes. Besides, what do you exactly mean by that? Do you mean for euthyroid people? Or for hypos? I don't think there are for euthyroid people - but I wouldn't swear to it. But, once you become hypo, you need what you need, there are rules and regulation and theories about optimal levels that hold water, be you man or woman. All the rules fly out the window!

[Sus64 in reply to greygoose]

Just curious whether men might require higher levels of T3, but I suppose it's not a "sex" hormone, in the way testosterone, estrogen, DHEA etc. are male/female specific.

[greygoose in reply to Sus64]

I'm not even sure that levels are different for them. I think they're more age specific than sex specific. I'll have to look it up.

[Sus64 in reply to greygoose]

Yes, that's interesting!

[thedeep in reply to greygoose]

One of the so called "best" endocrinologist in my place literally told me to come back when my TSH crosses 10. I waited for hours to get to him and he just sent me back hardly with in 5 min and also suggesting to meet a psychiatrist, even when I gave my all my previous data. So, I too wonder whether there is such a thing as TSH levels for Males and Females. I agree its usually the process here that Females are asked to reduce the TSH to below 2 or 1 to conceive, but I wasn't aware Males can just chill around with TSH crossing 5 or 6

[greygoose in reply to thedeep]

Your endo must have studied in the UK! That sounds very familier.

Well, just had a look at my big book of hormones, and it would seem that whilst there are differences between the sexes in levels of sex hormones, there's no mention of a difference in thyroid hormones and TSH.

It's true that women are advised to have a TSH of below 2 to conceive and have a healthy pregnancy, but that's not a reason why men should have higher levels. Even if they're not trying to conceive, they should have a TSH below 2 - or below 1, even! Hypo is hypo, and it starts at a TSH of 3. It is not ok for a man to have a TSH of over 6. Male or female, that means that you are hypo, and that your body is not getting enough T3 to make you healthy. It would appear that you have even worse endos than in the UK! I wouldn't have thought that possible.

[thedeep in reply to greygoose]

Spot ON ! Even I was not aware he was... !

Copy pasting from his alias as is:

" MBBS, MD - General Medicine, MRCP (UK), CCST - Diabetes & Endocrinology"

!!

[greygoose in reply to thedeep]

lol

[dtate2016 in reply to thedeep]

The deep:

Is it that males can function with a TSH of up to 10? Or is that endocrinologists have been given this magic number? The symptoms that you have are humanely intolerable! Drs have no idea!! I too was told that I was “borderline” with thyroid dysfunction over 30 years ago by one of the best endocrinologists. She prescribed Xanax (a tranquilizer) and told me “I think you are having family problems”. I burst into tears! I hadn’t said one thing about my family! (Still happily married) it took at least 5 more Drs and another endocrinologist (and how many years?!) to finally be diagnosed with Hashimotos and prescribed Levo which did nothing. I was 30 years old at the time with most of the symptoms you describe. It is NOT a disease of the mind. Many years later in another state visiting yet a different Dr to renew my Armour Thyroid prescription I was told that Armour Thyroid did next to nothing to treat low thyroid. My reply? “Then I must have an extraordinary imagination. Please write the prescription.” Drs work for us. (Anyway here in the states) We pay there salaries. Do not accept condescending, ERRONEOUS, medical opinions - please. In some cases I have heard of people taking along medical advocates. Be assured of your own knowledge of your body. As I have said to many a Dr: “I am in here with this thing, and have been for over 20 years - I am an expert on how I feel and what makes me feel better.” That we have to take a position like this to receive proper medical treatment is their shame, not ours.

Again I would plead and encourage, you are well along on the right path. Do not let perhaps even well meaning Drs feed you the idea that this present state of pain and other symptoms are anywhere near acceptable.

Forgive my passion. 😤

[greygoose in reply to dtate2016]

No-one can function properly with a TSH up to 10, male or female. It's not a question of sex. You are hypo when your TSH hits 3. But, in the UK, the guidelines recommend that people should not be diagnosed until their TSH reaches 10. I think this is a purely cost-cutting exercise - nothing to do with best practice. If they had to diagnose people at 3, they would have to diagnosed thousands more people, and that costs money because in the UK, all prescriptions are free once you've been diagnosed.

It is NOT a disease of the mind.

Well, in a way it is - not that it's caused by the brain but that the brain suffers terribly when it is deprived of T3. The brain uses more T3 than the rest of the body put together, I believe. And, lack of it can cause depression, anxiety, paranoia, lack of concentration, dyslexia, etc. etc. etc. But the treatment should be decent doses of T3, not antidepressants!

[shaws in reply to thedeep]

The Endo your refer to above, has to be avoided. The reason? is that he doesn't diagnose if TSH is lower and taking clinical symptoms into account.

Re referring you to a psychiatrist is a 'red flag' that he hasn't checked your free T4 or Free T3. T4 is the inactive hormone and has to convert to the active hormonie, i.e. T3. T3 is needed in the heart and brain, both of which have the most T3 receptor cells of which we have millions in our body and that's why we find it difficult as our metabolism is not working effectively due to low thyroid hormones.

50mcg of levothyroxine is a starting dose and 25mcg incremental doses every six weeks until symptoms are relieved and TSH is around 1 or lower. Symptoms are more important than the TSH (which is from the pituitary gland).

[greygoose in reply to Sus64]

See my reply to thedeep, below.

[Sus64 in reply to greygoose]

Got it, thanks!

[Mamapea1]

Hello thedeep

I'm sorry to hear of your trouble in getting a correct diagnosis ~ we have the same problems here! You have been given really good advice by our knowledgable members, and it is very important that you get the tests that they suggest, especially if you happen to be a vegetarian.

Hypothyroidism/hashimotos can cause malabsorption of vitamins and minerals, and you obviously are suffering from gut issues. It may be that your levels of B12, folate, etc., are low and this can cause horrible symptoms ~ I speak from experience! My GP said my levels were 'fine', but in fact I was severely deficient in many things, and became very ill.😕

Hypothyroidism can cause your adrenals to become unbalanced, and when you have adequate treatment, you may find this rectifies itself. Try and read and learn as much as you can about your condition on here, and this will help you to avoid further misdiagnosis from Drs.

Please ignore all suggestions regarding psychiatric help! Hypothyroidism makes you feel VERY anxious and stressed!

I hope you can get all the recommended tests and post the results on here for advice. Ayurvedic medicine is excellent IMO and there's no reason you can't continue to use it if it helps, once you have replaced the necessary thyroid hormones you desperately need. I wish you good luck with it all 🍀.

[thedeep in reply to Mamapea1]

Thank you so much.

[Mamapea1]

You're welcome ~ remember if you're taking Vit D, you need to take cofactors Vit K2MK7 and magnesium with it. Glad B12 was ok, but then so was mine!😳 yes, do test folate ~ they're connected. 🌻🐝.

[thedeep in reply to Mamapea1]

As of now the I take D3 (Cholecalciferol -powder form to be mixed with water) doesn't contain K2. I am searching for the same now. Thanks for the input.

[Angel_of_the_North in reply to thedeep]

Don't forget that D3 is not water soluble, it needs fat/oil to be used by the body. I'd consider changing to an oil emulsion when you've finished that lot.

[Hidden]

the gluten and similar proteins from the grass family includes not just grains but includes rice.

[Mamapea1]

There is lots of info on this forum regarding the best types and combinations of vits/minerals ~ perhaps you could search around on here too. I don't know what's available to you but I use Better You Vit D3 mouth spray 3000 as I have gut issues and poor absorption ~ they also do K2, B12, etc., but there are many other types. Start another post or search with the search bar on this forum.

When you take Vit D, it raises blood calcium levels, and the K2 MK7 carries the calcium away from soft tissues, where it can cause problems, and to bones and teeth where it is needed. Drs don't tell you these things I'm afraid ~ I didn't know either! Magnesium should be taken too, and there are also many types ~ check out which one is best for you. ☀️

[thedeep in reply to Mamapea1]

Sure thing. I take Magnesium Orotate(considered to be the best form) (Health Aid Brand, most of my supplements are from Health Aid). I will search around for the K2.

[dtate2016]

Highly recommend digestive enzymes - somehow Poor Digestion and Hashimotos goes hand in hand. Find one that includes pepsin. I have had Hashimotos for 30 years and only recently discovered by a test (from a health practitioner here in the states) that my digestive enzymes were extremely low. I did not know that it was causing the acid reflux! You may not have to take them every day - I take them at the first hint of “acid” and in 20 minutes - good as new. Also recently added “Fulvic Mineral Complex”. It further supports natural enzyme production. It has many trace minerals that also support mental clarity, balance hormones, and removal of toxins. The label also says it is an “ionic mineral complex necessary for metobolic and healing function”. We have to be careful about “selling” name brands here - so I have not mentioned it - but it has done amazing things for my energy!

Last, but not least my doctor has found two (weak) MFTHR genes in a DNA test that puts me in the same class as 30% of the population that has difficulty with the whole “methylation process”. People that have that genetic weakness have difficulty with eliminating toxins and metabolizing folate. Hence while we need perhaps more folic acid than those without thyroid problems, we can make matters worse (anxiety, mental fog, etc.) if we do not take the proper methylated folate that includes B1, B12, B6, - again, I cannot mention the brands - but there are many out there - all of them have some kind of name that includes “Methyl Support”, etc. Read all you can find on the Methylation process. One book you may want to consider: Dirty Genes by Dr. Ben Lynch. I have dealt with anxiety and panic attacks my whole life and managed to somehow function in the professional world - but three days on methylated folate and I could pass a Semi (18 wheeler) at 75 mph - ha! That might not sound like a lot to some, but honestly, I could not do it before. I am gluten free, and aspire to be dairy free - they say it best for Hashimotos. It’s tough!

Also kind of a long post - but this forum and all the thousands of books and naturopaths, its all we have. (After a while, you begin to notice a pattern and much of the the things that really work) I agree with earlier posts - we all must take thyroid replacement. I’m assuming you are in the UK where there is some monstrous reluctance on the part of Drs to prescribe T3. Many people cannot convert T4 to T3 (so says my Dr. here) . And you are getting almost none from your Dr. Selenium helps with the conversion - so whatever you do keep up with the Selenium. (200 mcg is my dose) T4 did not work for me at all (Levo). I’ve been on Armour Thyroid and NaturThroid for 20 years - it’s not perfect, but I am hardly aware that I have Hashimotos most of the time. With the right medicine, right dose, and knowledge of digestion and metabolism we just might live to a ripe old age!

One more thing, please share what you find that works for you. There are a lot of caring people here and are very interested in finding a measure of health. Until Drs take autoimmune diseases seriously, or until Drs become healers, we need a community / collective of patients who “heal thyself”.

[thedeep in reply to dtate2016]

Thanks for the reply. I have done some research on the digestive enzymes as I am already a IBS sufferer. Have tried few of them too. (Found lot of info from: *Victim - turned Doctor* forums where most of them try to sell their books or supplements). So I somehow believe that my gut issues might have triggered this condition, which I ignored in the beginning. I will definitely look in to "methylation process”. This is new to me. Also there are some claims that prolonged use of Selenium leads to Skin Cancer. Have to dig little deeper in to that to see the truth. I am from India and docs here are usually not so friendly and dont even bother listening to suggestions. So yes will look around this forum and will keep posting my progress.

[shaws in reply to thedeep]

Most of us take digestive enzymes with meals. Hypo - meaning slow, slows down everything until we're on an optimum dose. Pulse and temp are usually low. Most take digestive enzymes with meals usually betaine with pepsin tablets which provides the necessary enzymes. Most doctors don't know the difference and will provide acid-reducing tablets as symptoms are similar.

scdlifestyle.com/2014/08/th...

[thedeep in reply to shaws]

Good one. Thanks for the link.