Dear All, This is my first post and I hope someone can advise me what I should do next. I was diagnosed as hypothyroid abut 5 years ago, after about a years treatment my T4 was up to 21.0 on 150mch thyroxine but then over time my T4 dropped, I started to feel tired so my GP increased my dose. This cycle has continued and now I'm up to 400mcg thyroxine. I tend to feel tired if my T4 goes below 18.0 and feel very well on 21.0 I've just had my bloods done as I'm feeling tired again and the results are T4 16.1 and TSH 0.02 (T4 is the lowest its been for a long time). Ive been on 400mcg thyroxine for 6 months; after each dose increase my tiredness gets better but over time my T4 drops again. I take my meds first thing in the morning on an empty stomach. On ramipril and atenolol but take them later in the day. Surely there must be a reason why my T4 keeps falling? My past medical history included hypertension and kidney cancer (radical nephrectomy, all clear for 6 years). My GP is phoning me at some point today and I'm unsure what I should ask. I've read some posts on here and think I will ask for a complete set of bloods to see if any of my minerals are low or if my T3 is low (if he will test for that). Any other advise is very welcome. Thanks, Simon.
Now up to 400mcg Thyroxine, T4 fallen again. - Thyroid UK
Now up to 400mcg Thyroxine, T4 fallen again.
This article might be of some interest and relevance:
eje-online.org/content/160/...
Thanks Helvella, that article will take some time to digest. I know that my remaining kidney functions extremely well and has grown significantly (as shown on USS) to compensate for the loss of the other. I will however mention this to my GP. I've been looking at the Blue Horizon blood test packages; if I don't get much joy from my GP I may go for a full screen to try and find out what is happening.
Beta-blockers aren't really recommended for hypos. They can affect conversion of T4 to T3, and I read somewhere that they can lower levels of T4 in the blood. They can also affect blood test results. So, next time you have a test, try not taking the atenolol the day before the test. I may be barking completely up the wrong tree, but give it a try, anyway. 
Thanks greygoose, I've never heard that beta blockers affect conversion of T4 to T3; I will ask my GP.
To be honest, I very much doubt that he would know! Just like they don't know that you shouldn't take beta-blockers when you have asthma! He'll probably just say 'it's fine'.
How tired you are depends not on your T4 level, but the level of Free T3, the active hormone available to the cells. So that needs to be tested, not just T4 and TSH. Even then it cannot be properly utilised without the correct balance of vitamins and iron. Have you had your Vitamin D, B12, Ferritin and folate tested?
Hi Ruthi, I don't think my GP has tested T3 or Vit D, B12 ferretin & folate. I think I need a full screen to try and find out what is happening. I will ask for all of the above. Thanks.
Is it worth me having Thyroid peroxidase antibodies and thyroglbulin antibodies checked? If I have these antibodies does it mean my body cannot absorb the thyroxine? or are thery just used to diagnoses the cause of hypothyroidism? I've read lots on line but my questions have not yet been answered. Thanks everyone for your replies
Orange1971,
If antibodies are positive for autoimmune thyroiditis (Hashimoto's) that will be why you have become hypothyroid but positive antibodies won't affect your absorption of Levothyroxine.
Malabsorption due to coeliac disease (gluten intolerance) is a common cause of patients requiring a high dose of Levothyroxine. If you are coeliac negative then other causes of malabsorption should be investigated.
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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks Clutter, I've never been told why I have hypothyroidism but if finding out why doesn't affect my treatment, no point in being tested, or am I missing something? No point asking my GP to test if the results don't affect treatment. Id rather persuade him to test my T3.
I don't think I have coeliac, only symptom is tiredness and foggy head.
Orange1971,
There's no treatment for autoimmune disease but if you know for sure you have it you may want to switch to a 100% gluten free diet which may improve symptoms and reduce antibodies.
chriskresser.com/the-gluten...
thyroiduk.org.uk/tuk/about_...
Possible coeliac disease symptoms may include:
Diarrhoea, excessive wind and/or constipation.
Persistent or unexplained gastrointestinal symptoms such as nausea and vomiting.
Regular stomach pain, cramping or bloating.
Iron, vitamin B12 or folic acid deficiency.
Tiredness and/or headaches.
Weight loss (in some cases)
More items...
Coeliac Disease Symptoms | Wheat Intolerance Symptoms - Glutafin
glutafin.co.uk/coeliac-dise...
Thanks Clutter, that makes sense now. Awesome forum
In this case, I wondered about over-zealous removal of levothyroine from the blood?
Hi Helvella, I'm having a confused.com moment, what does over-zealous removal of thyroxine from the blood mean? Where could it be going?
It is processed in various ways and the kidneys and liver will remove it from the blood eventually. There's a kind of balance between what is absorbed, what is used, and what is removed in other ways. I certainly don't know the exact mechanism.
You are taking a very high dose, but its not very effective. So something unusual is happening. Free T4 of 18 is not above range, but it should also be achievable with a much lower dose. My guess is that at that level you convert enough to be OK, but you either aren't absorbing it, or its finding its way out of your system rather quicker than normal. Poor absorption is the more likely explanation. That will be due to other disease processes such as coeliac or pernicious anaemia, both of which are autoimmune diseases, or it could be poor absorption due to hypothyroidism itself, or it could be the way you take it.
Are you aware that you should take your levo three hours after and an hour before food with water only? If you currently take it with food, then your thyroid hormone may be binding to elements in your food making it unavailable.
Hi Ruthi, thanks for your reply. I currently take 300mcg 30-40 minutes before breakfast and 100mcg late afternoon. I'll try having my breakfast at work so that will be well over 1.5 hours. I only have a cup of tea and a crumpet but as suggested, I may need longer to absorb the thyroxine.
Or try taking it at bed-time? I do.
I don't think you need to go to those extremes. There is going to be a diminishing returns effect the longer you wait, so 30 - 40 minutes before food, with only water is probably going to get most of it into you.
Levothyroxine has a very long half life, so splitting the dose is really not necessary. There is regular talk about the fact that taking it once a week is probably fine. And your pm dose is only going to be on an empty stomach if you are very good about avoiding snacks and cuppas through the day.
Ah, OK. Willing to try anything to help improve things
Interesting; just spoke to my GP. He said my T4 at 16.1 is the lowest it has been since early 2013 so has recommended I increase my thyroxine from 400mcg to 500mcg. I asked him about T3; last time it was tested was in 2013 and it was slightly above the reference range however my T4 was 23.0 he said he will test it again in 3 months time. I asked him about B12 and my last result earlier this year was 300, i said I had read it needs to be over 600, he didn't argue and has prescribed me B12 tablets (I also have tinnitus in my left ear so this may help with that). My GP will also test my Vit D in 3 months time.
Also ask about ferritin, while he is in a good mood!
B12 tablets from the doc will probably be too low a dose. You need the sublingual lozenges - available on Amazon. In an ideal world your B12 would be 1,000. 300 is in range, but definitely inadequate.
There are other possibilities here. You may have low stomach acid as a result of being hypo, which will cause generally poor absorption. Normal medical tests are difficult and expensive. But you can do a home test which is simple and quite effective.
stopthethyroidmadness.com/s...
And you could have Pernicious Anaemia and/or coeliac disease. I am beginning to think that it is worth you having antibodies for hashi's as well as these two conditions tested. AI diseases tend to hunt in packs, so it is well worth knowing if you have one, in order to do what you can to prevent the others. You do not need to be anaemic to have Pernicious Anaemia (which is where the body destroys its own parietal cells, which are essential to the absorption of B12). Anaemia can be a very late stage symptom. And you do not have to have raging diarrhoea to have coeliac disease, there is a variant, often called 'silent coeliac' where the cells in the small intestine have been damaged or destroyed, but the patient has no diarrhoea or is constipated (difficult to distinguish from constipated due to hypothyroidism).
If you can afford it, a private blood test from Blue Horizon for all these things would give you answers now, and B12 would be worth testing before you start supplementing.
Thanks for your reply Ruthi; excellent advice and info. Interestingly, before I was hypothyroid i suffered badly with acid reflux and was prescribed lansoprazole 20mg. I thought that due to reduced acid maybe i wasn't absorbing my thyroxine so i stopped taking it 6 months ago. Clearly my T4 keeps dropping so stopping the lansoprazole has not had much impact. Incidentally, I don't get much acid reflux anymore and only use gaviscon 1-2 times per month.
Thanks for the B12 advice and advice on having other tests; i will look into this. I've already looked at Blue Horizon and feel it would be worth having a full screen.
Good linked article; I will read and absorb the information properly when I'm at home later
Re the B12 sub lingual lozenges; there's loads on amazon; which strength should i go for? presume I take them daily?
Jarrow formulas methylcobalamin 5000iu
They generally recommend the 5000s on the PA board
Thanks everyone for your help answering my questions. Very much appreciated!
Hi Sandy12. Thanks for your reply. When my T3 was slightly above the reference range my t4 was quite high, from memory about 23ish my highest ever.
How easy is it to get NDT on the NHS?
I'm surprised that as I'm now on 500mcg thyroxine my GP doesn't fell that I need to see a specialist?
I'm not knocking my GP, he has been fantastic over the years, including my renal cancer episode.
I am however finding this forum very good and informative and even during my short time on it, iv learnt sooooo much, so thanks all.
Wow, that's news to me. I know I need beta blockers (atanolol) and ramipril to control my BP. Prior to hypertension diagnosis my bo was 240/120 at rest, probably contributed to my kidney cancer. What could I take in place of a beta blocker? Any suggestions welcome. Thanks.
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