I was first diagnosed with high THS two & a half years ago, I was prescribed 25 mg, after 12 months a blood test showed the THS had dropped, but I had anaemia, something I have never had. I had a gastroscopy and endoscopy, neither revealed a problem. As I had read that reducing THS (or a low one) could induce anaemia, i decided to stop medication, with agreement of GP (an understanding one in the practice, not the one who had originally persuaded me to go onto treatment). I was called for another blood test recently, and saw the same doctor today with the result, she understands my decision not to have treatment as I have no symptoms, I have always lead a very active lifestyle and have no wish to become anaemic. My THS is 22.52; t4 - 8.4; t3- 4.3; She is taking me off the list to have annual blood tests, but should I notice other symptoms, I can always request a blood test. She did tell me there was a natural treatment, but where can I obtain the NDT?
molliemo18
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molliemo18
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Your Dr may be understanding of your wishes, but sadly appears to understand little of thyroid disease. Taking your last comment first, NDT is a natural treatment only in so far as it might be considered natural to replace missing endogenous human hormones with porcine (pig) or sometimes bovine (cow) thyroid, dried and compounded into a tablet. It is known as Natural Desiccated Thyroid to differentiate it from synthetic Levothyroxine or Liothyronine, which are the man-made equivalents of the T4 and T3 respectively, produced by the thyroid. Why would your GP be advising you consider taking NDT if she has seen your blood results yet is not instigating NHS treatment accordingly? Those blood test results show you to be hypothyroid and that your thyroid is failing - even without their respective reference ranges which are necessary to comment more accurately, your TSH at 22.52 is way above range (the upper limit of which will be about 4.5). It is a pituitary hormone called Thyroid Stimulating Hormone, which is released by the pituitary gland when it senses that the body's T3 and T4 levels are too low, so the higher it rises the more it indicates that your thyroid is failing to respond effectively. T4 is the largely inactive storage pro-hormone that converts to much of the active and very important hormone T3 that is required by the body's cells (some is produced by the thyroid itself, but most is achieved by conversion of T4 to T3 in peripheral tissues such as the liver). So without the reference ranges, I'm only guessing, but with those numbers, your levels are likely to be at the bottom of their ranges, and the FT4 may even be below range; whereas if optimal, FT4 would be in the upper half of the range, and FT3 in the upper quadrant of the range. That you feel symptom-free does not mean that things are going well - I didn't have "thyroid" symptoms either when diagnosed, but was described by my Endo as having one foot in the grave ... Low thyroid hormones can have both short and long term consequences involving the heart, brain function, blood pressure, cholesterol, to name just a few. Regarding your TSH reducing after starting treatment, that is exactly what the Levo should have achieved for you, but it isn't a cure, only a treatment that has to be maintained. But regarding anaemia, the correlation is between hypothyroidism and anaemia; and many studies have now proven the inter-connectivity between anaemia and both sub-clinical and overt hypothyroidism. Hypothyroidism is known to cause microcytic, normocytic, and macrocytic anemia, to the extent that the rate of anaemia in individuals with symptomatic hypothyroidism is approximately double that of the general population. There are also associated conditions such as B12 deficiency directly linked to both hypothyroidism and anaemia. Where anaemia may be atypically correlated with low TSH plus high levels of FT3 & 4 is when it is the presenting symptom of Graves' disease ie a form of hyperthyroidism, which is definitely not demonstrated in your blood results; and it is also not uncommon with Graves' generally. I'd suggest that it is important that your Levothyroxine is reinstated at a starter dose of 50 mcg unless you are older or have cardiac problems; and adjusted according to 6 weekly blood tests until you are euthyroid and symptom-free; and then maintained. Others will advise about the full range of blood tests required in order to identify if you have autoimmune aspects to your thyroid disease, and/or vitamin etc shortages.
MasieGray is absolutely right. Your doctor is guilty of criminal negligence and ignorance to allow a patient with a TSH of over 22 to go without treatment. Your death would be on her hands. It's understandable that you don't know anything about thyroid, but that she is ignorant to that point is inexcusable.
There are over 300 symptoms of hypothyroidism, I defy you to tell me you don't have a single one of them. It's not just about putting on weight, feeling tired/depressed and losing your hair. It's also about developing anemia! And, just because you didn't have that before, when your TSH was high, doesn't mean that you can't develop it as your TSH reduces. New symptoms make themselves felt all the time until your treatment is optimal. I don't know what you've been reading, but either the author misunderstood, or you did.
You are playing a very dangerous game, and my advice would be to get back on thyroid hormone replacement of some kind as soon as you possibly can, the consequences of going untreated can be horrendous. And, forget the word 'natural'. It doesn't mean what you think. A pill is a pill is a pill, and you can't make one without some very 'unnatural' ingredients to hold it together.
I agree with the other responders. Your thyroid gland is struggling to cope putting many of your organs under strain. My cousin had undiagnosed hypothyroidism caused by hashimoto’s disease and sadly developed an enlarged heart and required a pacemaker at age 36 directly due to untreated disease. Have you had thyroid antibodies tested? If they are raised it is positive for hashimoto’s disease, an autoimmune condition which attacks and destroys the thyroid over time. You need to read and learn more. Sadly many gps know little about hypothyroidism which makes it hard to make informed choices without all the facts. Good luck on your journey.
In reply to MaisieGray, my doctor did NOT advise me to consider taking NDT. I asked her what I could look at with diet etc to avoid taking Levo. All that a year on Levo achieved was to give me anaemia and yes reducing my THS, but my FT3 & FT4 levels remained in the normal range, as they have in the last year without Levo. My haemoglobin has recovered to a normal level, as a regular blood donor I have never had anaemia induced by hypothyroidism. At 74 I wonder if I have always had a high THS. As I said in my first posting, I live an active life style, regular hill walking and mountain climbing when I have the opportunity, being anaemic would certainly have an effect on my activity. It would appear that taking an iron supplement combined with Levo is not recommended, any advice on this would be appreciated. Taking Levo for the year did not have any noticeable affect on me, and I would not object to going back on Levo if I could avoid anaemia.
So, during that year, how many times did your doctor retest your levels? Did she retest you after 6 weeks, as she was supposed to, and increase your dose to 50 mcg? How high did your dose get in that year?
If you were on 25 mcg for a year, it's not surprising that your FT4 and FT3 didn't rise because you weren't taking anywhere near enough. The fact that the TSH (Thyroid Stimulating Hormone) decreased means nothing, it's a pretty useless test once you are on thyroid hormone replacement (levo).
But, whatever happened to your levels, levo does not cause anemia. It's not a drug, it doesn't cause anything. It just replaces the hormone your thyroid can no-longer make enough of.
The way you worded your original post, it did sound as if your doctor had suggested NDT. And, it would have been a good thing if she had - and if she'd prescribed it! But, if you were meaning was there a so-called 'natural' way of restoring your thyroid hormone levels with food/supplements, then she should have told you that there wasn't. You can only replace a hormone with a hormone, not a vitamin or anything else.
Did you take your levo pill and your iron pill at the same time? If so, that would not have worked. You should leave at least four hours between the two. Both levo pills and iron pills should be taken entirely on their own, with water, not mixed with anything else. Although, you can take vit C with both of them, to increase absorption. You should take vit C with iron because it protects from constipation. Another good way of raising your iron is to eat liver once a week, along with some other food with a good level of vit C in it.
I realise your new to this forum, and don't know how it works, but I'm afraid MaisieGray will probably not see this reply because you didn't click on the blue reply button under her comments. So, I have notified her for you.
molliemo18 I inferred from your post that your Dr was being insufficiently proactive in investigating the cause of your abnormal TSH level and recommending appropriate treatment as/if necessary; and in clarifying for you the cause of your anaemia and its relationship with thyroid disorders. As far as I'm aware, Levothyroxine does not cause anaemia. Whatever the ultimate diagnosis, it's reasonable to expect a Dr would monitor and investigate the cause of an abnormal TSH level especially when it had been lower with medication; and stopping repeat blood testing in the light of that TSH result seems at best, counter-intuitive, when it might have more properly indicated a need for a referral to an Endocrinologist. Response to thyroid hormone supplementation, and to thyroid disorders, is an individual thing. Some people report almost instant and extreme reaction to thyroid meds, some to one form but not another, and others like me don't really notice anything contemporaneously until I look back to when I started and compare with now. Likewise some are very aware of being symptomatic and incapacitated, others less so, or not at all.
If you do not feel ill without T4 therapy, then its possible you have a genetic condition called TSH-resistance, where your thyroid is not sensitive enough to TSH, so that you need an elevated TSH to force it to produce enough hormone. This is uncommon but is known and it runs in families.
Just a reminder that the thesis all of us should hold to, doctors and patients alike: consider the symptoms first, not so much the biochemistry. There are strange people in the world who exist reasonably well with numbers that seem extremely out of line with the vast majority. T3 resistance is another, where high FT3 is caused by poor T3 receptor activity, requiring high FT3 to "Kick through". There are also people with the weirdest variation in how the transport proteins take T4 and T3 round the blood. This includes people with no major transport protein at all, and others with mutations that cause huge changes in the strength of binding of hormone. If someone really does not have any discernible symptoms, there is no call for therapy until symptoms really do show themselves.
My reason for putting my own history in the first place, was in response to the lady who was treated callously by her doctors, to show that all surgeries are not the same. I did not say that Levo caused my anaemia, but by reducing my TSH, it resulted in me becoming anaemic. It was because of my high TSH, that the doctor wanted me to take Levo. She described my high TSH as akin to squeezing out a dishcloth, and did not know how much was left to squeeze. I WAS tested after 6 weeks on 25mg, and as my T3 & T4 levels were originally okay (and have remained okay over the 2 1/2 years), there was no need or expectation for them to rise. The Levo was SIMPLY to reduce my TSH, which it was begining to do, so I stayed on 25mg. I had not taken iron tablets until after the year on Levo, when I no longer took Levo. When the annual blood test showed me to be anaemic out of the blue, the surgery urgently booked me in for top down and bottom up endoscopy's to see where I was losing blood/ bleeding - I wasn't, both examinations came back negative. I then read that a low TSH, or reducing it could cause anaemia - that was the answer. So I stopped taking Levo, took a 30 day course of iron, plus liver weekly and spinach daily - and hay presto - no longer anaemic. When I was on Levo, I took it 1/2 hour or more before breakfast. I never took Levo & Iron at the same time, having read one couteracted the other, that is why I stopped the Levo, so that I could correct the anaemia. Why does greygoose think I should take Levo, when my T3 & T4 are okay? I have the full printout of my last blood test, what other figures does greygoose want?
I like diogenes last sentence - "If someone really does not have any discernible symptoms, there is no call for therapy until symptoms really do show themselves" No one knows how long I have had a high TSH, maybe all my life. And what is Normal? If you had a gin & tonic, would you expect to look as if you have Scarlet fever in 20 minutes? NO. But that is normal for me, I am highly allergic to quinine! & where did that come from?
I realise that those of you, who have made critical appraisals of my history, have a more serious condition than I do, which is no symptoms and just a high TSH, but your soap box attitude, disappoints me. I am not as knowledgeable as you in the intracacies of thyroid problems, but I am capable of knowing with none of the published symptoms of low thyroid levels (admittedly I do not know the over 300 mentioned by grey goose!) just a high TSH, not to 'mess' with my metabolism. You would have difficulty to find a 74 year old fitter than me. I rest my case.
I haven't heard of thyroid meds causing anaemia. (I assume it is iron deficiency anaemia you are referring to?) I spent most of my life from adolescence being iron deficient, and it was many years before thyroid replacement. I have found a solution - dietary - and simultaneously I have been on thyroid replacement for many years.
I now eat much, much more meat - about 2x the dietary recommendations, sometimes more, lots of red meat, and absolutely no meat free days. (Sounds lovely, but frankly if I have a day of not eating meat, I'd need to eat more on other days to compensate.) I let my body tell me how much to eat. When eating what is recommended I was always iron deficient. More recently I am perimenopausal and have fewer periods, and my ferritin is now optimal.
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