I am (now) a 73 year old male and hope that my experience with hypothyroidism over the last 15 years may be useful to other members of this group.
I was mis-diagnosed as having an over active thyroid by my then GP back in 2002 after my fatigue levels had become so bad that I was unable to work. The GP diagnosed over active thyroid and prescribed carbimazole which I took for a couple of weeks until I had my first appointment with the endocrinologist. This latter chap after blood tests confirmed that my thyroid was somewhat undersized and definitely not overactive, it was, on the contrary,under-active. The GP had been confused by the effect on the blood tests of some tablets I had been taking to assist with osteo-arthritis that included a deep-sea seaweed extract (iodine rich). My thyroxine dose was set (after heaps of blood tests) at 150 mcgs. That worked fine, until December 2014.
I became seriously fatigued again by the end of December 2014, and my current GP practice decided that my 150 mcgs should be reduced to 125 mcgs. That reduction in fact had the opposite effect, and my fatigue worsened. In one of the blood tests that followed, it became clear that apart from the fatigue, I also had prostate cancer, and for the next two years that was naturally the focus of attention, until the completion (very successfully!) of hormone injections and radiotherapy in late 2016.
My GP a few weeks ago decided that my thyroxine level (according to the latest THS blood test result) was still too high and wished to reduce my dose to 100 mcgs. My fatigue level had dropped, but this was due to my efforts with dietary changes, usage of a new CPAP machine for sleep apnoea and a substantial change in my exercise regime that resulting in a 10 kg weight reduction).
I objected, and asked for new test including T4 as well as TSH, and that produced a T4 result of 23.6 (range 9.0 to 25) and a TSH of 0.19 (range of 0.27 to 4.2). I found a dosage guidance comment on the Thyroid website that said "In most patients this will be associated with a thyroid-stimulating hormone (TSH) reading in the lower part of the reference range and a level of thyroxine (T4) in the blood towards the upper part or even slightly above the reference range and my current dosage seems to me to almost exactly producing results that are within that guidance. In the end, my GP decided not to insist on a thyroxine reduction!
I still believe that my dosage should be 150 mcgs, particularly as my pulse rate has reduced over the last four months and is getting to the 'seek attention' rate of below 50 bpm at rest. However, before I pose that question, I would like to know if my dosage was increased to 150 mcgs would that not cause my TSH to drop lower from the current rate of 0.19? I'd love to have comments from others on this forum.
Hello Harfin, thank you for posting your story. Firstly may I ask whether you have thyroid antibodies? These would be listed in your blood test results as TPO and TgAb otherwise known as Thyroid Peroxidase antibodies and Thyroglobulin antibodies.
Generally people on this forum say they feel best when their TSH is near to 1.0 or lower so long as FT4 and FT3 are in range. People without thyroid disease may be fine anywhere in range but when we're dependent on Levothyroxine it seems to work best to be in the lower part of the range.
If you have thyroid antibodies then there are other things that you can do to optimise your health but first check your blood tests and let us know. I don't think anyone can answer your question about what might happen to your TSH if you increase your levothyroxine dose without knowing what your FT3 or antibodies status is.
The only blood tests my GP would consider in addition to seeking the TSH figure was the T4 figure. Back in 2002 the endocrinologist was very much on the ball and I know he initiated other test results included T3.
The blood test result lab report done on 23 June by my local GP has the comment on TSH " result suggests marginal thyroxine over replacement. British Thyroid Association suggest TSH should be within the reference range"
The British Thyroid Association give guidelines, however, treatment has to be individualised. You are the patient and know when you feel well. You may find that if you optimise your vitamin levels and reduce antibodies (if you have them) then your Levothyroxine will work much better. Then you will find you will naturally stay in range, but if your Endo or GP doesn't tell you about optimising vitamins and trying gluten free then how can they expect you to stay in range because you'll feel rotten?
The range that is set is based on healthy people with no thyroid disease. I'm thinking it may not be exactly relevant to those with thyroid disease although it's certainly a guide as to what is the norm?
My suggestion would be to take either what Slow Dragon has suggested, or even 3000-4000iu for 3 months then retest. I've not used a spray, I've always used softgels - Doctor's Best as they contain only two ingredients, the D3 and extra virgin olive oil. When you've reached the recommended amount reduce to a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Ferritin should be half way through it's range. You could either supplement with iron tablets, in which case you should retest after three months as too much iron is as bad as too little. Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Or I raised my ferritin solely by eating liver regularly. The maximum is 200g weekly due to it's high Vit A content. Also include lots of other iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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Have B12 and folate been tested?
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Everything needs to be optimal, not just in range, for thyroid hormone to work.
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Nothing else jumps out as needing attention as far as I can see.
I tried iron tablets and they did absolutely zilch! I pointed out to the pharmacist who supplied them that the packets of tablets do not include any health warnings and the effect that they may have on other health issues.
I also told the pharmacist that their levothyroxine tablets do not (or did not at the time) any instructions regarding taking them on an empty stomach nor an hour prior to eating.
in reply to
Oh, and as I have stated earlier, I am a vegetarian so animal sources of iron (i.e. liver) are not an option for me.
I don't know whether you took your iron tablets with 1000mg Vit C each time, that aids absorption. Or maybe you have an absorption problem. If you have Hashi's you could very well have an absorption problem, and I don't know if you have Hashi's as I haven't read all of the posts in your thread, I just responded to this particular one a Shaws tagged me in.
I'll leave you to find a way to raise your ferritin then.
I have to say, nobody is hypo by choice! It's not something anybody would want to have - which is why we're all here!
Yes, if you went back to the 150 mcg dose, your TSH would drop even further. But, so what? Once you are on thyroid hormone replacement, the TSH is irrelevant, and doctors should not be dosing by it, because that is the best way to keep a patient sick! It doesn't matter how low the TSH goes. It's only a problem when it goes high. What is more important is the FT4. And, it's possible that yours would be over-range if you went up to 150 mcg. But, that's not the most important, either. The most important is the FT3, which doctors rarely test because they don't understand it - and because the test is expensive!
If you need your FT4 to be over-range to feel well, it's more than likely because you have a conversion problem - you know that T4 is a storage hormone, and has to be converted to the active hormone, T3. Well, we're not all very good at that - for various reasons, but especially if we have high antibodies. So, I repeat Nanaedake's question : have you had your antibodies tested? I rather suspect you do have high antibodies, going by your story. It's not likely that the iodine in your medication made your thyroid hormones so high that your doctor misdiagnosed you with hyperthyroidism. It's more likely that your thyroid hormones were high because you have Hashi's - Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis - which starts with an attack on the thyroid. The dying cells dump their store of hormone into the blood, causing high levels of T4 and T3, which make it look as if you're hyper. However, unlike hyper, the levels go down by themselves, leaving you hypo.
But, I digress. Do you always get a copy of your blood test results with every blood test? If so, post a few on here, with the ranges - very important, ranges - and let's have a look to see what's been tested, and what's going on. It would be interesting if you've also had nutrients tested, too : vit D, vit B12, folate and ferritin. It's not just about hormones.
See my most recent response to nanadake for the most recent blood test.
In the past I haven't always requested printed results, but since this latest 'fiasco' I will always be getting printouts in future!
If needed I am happy to list the 14 items in the blood test 'Full Blood Count' result, there are 14 results in that!
in reply to
I forgot to add, all the previous blood tests from pre June 2017 back to January 2015 were to do with treatments for prostate cancer (PSA etc). Now that that episode is in the past, the PSA's results will be done and go to my oncologist pre his 6 monthly monitoring.
I should add that the new CPAP machine has astounded me (and the sleep clinic) with the fantastic improvement in banishing tiredness. (I make a distinction between 'tiredness' and 'fatigue' they are never in my experience stages of the same thing!
No statins !!!! Gave them away many years ago. They exacerbated the joint pain (knees and hands). I do take a different cholesterol drug (ezetimibe) which doesn't (at least for me) aggravate muscles and joints.
I will be seeking an appointment with the cardiologist soon, to discuss the necessity for (and an appropriate dose) of atenelol (beta blocker)
Mask itself (or at least the new design one I now have with the ResMed "AirSense 10") is brilliant. The deep sleep courtesy of that plus the reduction in the hourly apnoea rate) is the best it has ever been.
But why are you taking a cholesterol drug at all? If you have high cholesterol, it's because you are hypo. It will reduce as your T3 rises. Having low cholesterol is far more dangerous than high cholesterol. Cholesterol is an essential nutrient. Low cholesterol means low sex hormones, and low sex hormones can cause prostate cancer. Cholesterol doesn't cause heart attacks or strokes. I think that's the direction your research should be taking.
That cholesterol drug is an historic remnant! As far as I am concerned my cholesterol level is fine, and for me ceased to be an issue when I became a vegetarian At the time it was prescribed by a cardiologist when I was first diagnosed with heart disease (clogged cardiac arteries) and along with many many others was prescribed aspirin (though the surgeon subsequently replaced that with clopidogrel), beta blockers and statins.
When I objected to statins I was 'pressured' into taking that alternative.
The blood thinner (clopidogrel) was awful, and I decided to stop that which really put the specialist's nose out of joint! so I agreed to revert to aspirin.
I will be seeking an appointment with the cardiologist shortly.
My prostate issue started over 30 years ago when I was found to have an enlarged prostate. By the end of 2015 a tumour was discovered, by subsequent scans and a biopsy, and was successfully treated with hormone manipulation and radiotherapy. My PSA level result is now "almost non-detectable"
But the cholesterol didn't cause your clogged arteries.
Anyway, going veggies had nothing to do with your cholesterol levels. Cholesterol is basically made in the liver - the more you eat, the less the liver makes; the less you eat, the more the liver makes. But, you would have a hard job to eat enough cholesterol to cause your levels to go over-range! And, butter, animal fat, etc. has nothing to do with anything.
Just be aware that betablockers block the conversion of T4 to T3. I was told this by a cardiologist and have also read this. If you absolutely need them then you will need blood tests and adjust the amount of levothyroxine you take according to results.
There are vegetarian forms of iron supplements although it may take longer to raise your levels. People who use cast iron to cook derive a little in their food but not enough if you are deficient.
Drugs like betablockers have many, many more potential side effects than a substance that is naturally available in your body like iron. You only have to read the patient information leaflet to see for yourself. Ask the cardiologist if low iron and low B vitamin status could affect heart function.
When we are hypothyroid, no matter how fantastic our diet, our body cannot always utilise the vitamins in our food. I'm not sure why except that low stomach acid and absorption seems to be a problem. Or it could be some other mechanism yet unexplored. However, if you look through the posts on this forum, you will find that most people who get their vitamin levels tested are deficient so there is definitely a link between thyroid conditions and deficiencies. Cancer treatments also have an impact. We can't all be terrible at managing our nutrition. I know for one, I always cook from scratch with fresh ingredients. The B vitamins are critical for good thyroid health so get B12 and folate tested just in case. Also minerals are important too.
Be kind to your body and and it will reward you with vigour. So glad your treatment for cancer went well.
Here are some interesting research papers on selenium supplementation and vitamin D deficiency.
There are a lot of people and a lot of science that states that Statins are, well, dangerous and with lots of side effects and merely make a pretend cholestrol test number look better. Be that as it may, to regain your health, for starters, get plenty of sunshine on your skin. For those who study Vitamin D and follow Vitamin D's evolution into an extremely important substance, prostate cancer is, along with MS, Parkinsons, etc. predominantly a Vitamin D deficiency disease.
SlowDragon has talked about your vit D, but your ferritin is also too low. It should be at least mid-range.
But, there are not B12/folate results - and they are likely to be low, too. No antibodies and not FT4/FT3. So, these are not complete bloods, and don't tell you everything. Perhaps you could get private tests? You really do need to know the other results.
But, in any case, never allow your doctor to dose you by the TSH only. Before agreeing to a reduction in dose, insist that you need to see your FT4 and FT3, because you are only over-medicated if your FT3 is over-range.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. Both companies often have money off offers
DIY finger prick test or option to pay extra for private blood draw
Always get all thyroid blood tests done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay until immediately after. This gives highest TSH, all many GP's look at.
Like many things, each health issues seems to be linked to or affect other health conditions. So fatigue in many cases I have been told can be linked to or affected by heart disease, thyroid disease, sleep conditions, arthritic conditions, diet, weight and so on.
In my case, my narrowed cardiac arteries have been stented since 2005 and my heart test results were greatly improved.
My sleep apnoea has bee well under control with CPAP machine since 2007 - results with the latest machine are amazing. Apnoea rate dropping, deep sleep duration at record (for me) level.
My thyroid condition was well under control with thyroxine at 150 mcgs; when that was reduced, the consequences were as I described.
I changed my diet in 2005 to becoming a vegetarian; all blood test measurements regarding vitamins and minerals are now well under management.
I changed my exercise regime from energetic walking to a stationery exercise bike, and my weight has dropped by 10kg in the less than a year.
So, I still have remnants of fatigue, and I have to say that that may well have be partially down to my age
Best way to increase vitamin D is by sunshine, but with thyroid issues, even going out in Sun as much as possible may not raise levels much. We need or use more or can't make it efficiently
Vitamin D supplements are made from Australian sheeps lanolin (they get plenty of sun) They were not harmed in the process
Good vitamin D level is essential for thyroid hormones (at least 70nmol) and also recommended for protecting against cancer.
Here's a cute item. Ducks need Vitamin D just like us. When they preen, they spread cholesterol-rich oil from a gland on their chest to their feathers for water proofing. The sun shines on the feathers changing the cholesterol to Vitamin D. The next time the duck preens, it is taking the Vitamin D into its mouth. Same is true of chickens, except they mostly are raised inside warehouses! My friend in Yuma, Arizona had a docile, fixed-at-birth year old pit bull. The dog would stand at the door till let out, then lie down, roll over on his back exposing his bare belly to full sun for 10 minutes in 115 degrees fahrenheit heat to get his vitamin D. The moral is: a young neutered dog, bred to kill, still has more natural sense about survival and health than the whole of sun-block-purchasing, hiding-from-the-sun-false-cancer-fear white, so-called western civilization : ) If you don't understand that message, I have a bridge in Brooklyn I'd like to sell you.
Hello Harfin, thank you for sharing your story. If I may add, hydration is very important. Everything circulates & functions better with enough water. Hugs🌸
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