Scared and confused, at my wits end

I really don't know what to do for the best. After 4 yrs as a hypo and the past 3yrs of being on 150mcg Levo with a TSH of 0.005 suppressed (range starts at 0.35) and FSH at 16 (range is 9-22) Which I felt really quite well on for months, I was told 10 weeks ago to reduce my doseage so went to 150 one day 125 the next so to give an average of 137mcg. Results came in today my TSH has risen to 0.006 and my FSH has dropped to 15 and yep I could feel the difference kicking in a few weeks ago as feel pretty rubbish.

My B12 was 224 (range started at 155) in Nov - managed to persuade doc to put me on tablets as she refused me injections, now to find that my B12 has dropped to 214 despite taking the tablets I'm a little confused. Still waiting for my Vit D result to come in but back in November it was 24, and put back on to tablets as it has been low for some time then increased so when it increased they took me off the tablets. Then of course it plummeted again so hence back on the tablets!

Anyone any ideas of what I can do going forward?

I'm thinking I don't convert T3 to T4 very well and this might be what's causing my issue.

My NHS trust won't pay for T3 tests or treatment. Im close to ordering it off the internet but I'm s little nervous about doing so.

Im sorry for the long post but I don't get anywhere with GP and hospital discharged me 2 yrs ago.

27 Replies

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  • What type of B12 and dosage of B12 are you taking?

  • Hi thx for replying. I was put on Cyanocobalamin 50mcg 1 per day. The doctor put me on this very reluctantly and refused to give me injections (which I have been given before as my B12 dropped to 5) because I am in range.

  • Try 5000iu of methycobalamin sublingual (Jarrow formulas do one) a day until your levels reach around 1000. Cyanocolbalmin is the least bio-available form and as a tablet you swallow is pretty useless.

  • methycobalamin is much better hon, I was only on 1,000iu a day for two weeks and my B12 went over range!

  • Hi MissCherry, you need good ferritin and cortisol for your Levo to convert. BTW, it's T4 to T3. Levo is T4. Really, don't be nervous about ordering T3. While it's potent it will help your body in sooo many ways. In fact, NDT is probably not any more in price than T3 and figuring dosage might be easier than figuring out how much levo to drop and how much T3 to add. It is not dangerous to self treat. It is dangerous to be MISTREATED.

  • Before you think about the conversion problem - you will need your FT4 and FT3 results to see what is really happening. I think it was wrong to reduce your dose if your FT3 was in range - so what did your Doc base that decision on ?

    Your B12 is VERY LOW - and it should be investigated. There are other tests you will need. The link below will tell you everything you need to know about B12 deficiency,

    b12deficiency.info/signs-an...

    Which B12 are you taking - Jarrow Methylcobalamin I have read is one of the best. Maybe you are swallowing the tablets but not absorbing them due to low stomach acid. Is it one that will dissolve under the tongue to avoid absorption issues ? Have you been tested for PA ?

    VitD is fat soluble so needs to be taken with the main meal or good fats. It is not an expensive supplement - so keep dosing - especially throughout the winter. You should have been given loading doses and then a maitnenance dose of around 5000 IU's daily.

    Have you had your Thyroid Anti-bodies tested ?

  • Hi thx for replying to me. I am on Cyanocobalamin 50mcg 1 a day. The doc gave me this very reluctantly as of course to them I am within the normal range regardless of being at the lower end and no justification from them to have any higher dose or injections again.

    I did have PA tested but came back ok.

    Vit D I was put on 2 tabs per day now they reduced it to 1 pd on my last repeat prescription. Now taking Colecalciferol Vit D3 800u 1 pd. I take it at lunch time as I take my thyroxine first thing in s morning.

  • Your VitD dose is far too low - as is your B12. Will have little impact on your levels. I have made suggestions in my previous answer to you....

  • take vitamin K with your vitD, absorbs better

  • Agree with all of the above. Just wanted to say that you can order private blood tests - and you'll need to if you do decide to go down the self-medicating route.

    If your doctor won't do FT3, you can get it done for yourself. You only need to prick a finger and fill a tiny vial - it's easy - and post it to a lab. I'll find the link to our Thyroid UK page about this in a moment.

    I don't think your doctor should have reduced your Levo - there was no reason for it. TSH being suppressed means nothing on its own and is very common for those on thyroid replacement therapy. If he'd found your FT3 was way over range, maybe - but as he won't test that it's no rationale for reducing dose.

  • thyroiduk.org.uk/tuk/testin...

    I use Blue Horizon through their homebloodtests website.

  • Hi thx for replying to me.

    They said that I've been suppressed for too long and they are concerned about atrial fibrillation with me so that is why reduced. They wanted me to go straight down to 125mcg but I thought it was too much to drop down too so managed to get them agree to alternative tablets each day.

    The last time I had my T3 tested was about 2 yrs ago by the hospital just before they released me. Again as I was normal range and in the middle they didn't care less.

    I live in Hull so have one of the worst PCT going.

    So far there answer is weight loss surgery for me and referred me for that instead.

    I know that this isn't the answer and I tried to get them to reason with me by helping get into the optimal ranges for everything instead but was met with the usual blank look by the doctor.

    So depressing.

  • I know. Your doctor has unfortunately been trained by someone who doesn't really understand how it works.

    Here's how they get confused.

    In hyperthyroidism - overactive thyroid - blood results will show high levels of FT3 and very suppressed TSH. A lot of research has been done on hyperthyroid patients showing they're more at risk of atrial fibrillation and osteopenia. That's because there's too much FT3 sloshing around, making the metabolism go too fast and damaging body tissues. But because high FT3 is found in the presence of very low TSH, doctors got muddled about cause and effect, and decided it was the very low TSH that put you at risk, regardless of what the FT3 result was. A couple of decades ago, someone somewhere decided that the only test you need to do is TSH.

    However, many many folk find that any amount of thyroid replacement hormone suppresses TSH - even if their FT4 and FT3 results come back under range.

    Many many patients are chronically undermedicated because of doctors trying to get TSH results into the range. We see many of them here every week - and those are just the people who find us. How many others are out there believing it's not their thyroid, it's some other illness or menopause or "getting older"?

    As I said, your doctor should not have reduced your dose - you were well on it. Some doctors honestly believe that overdosing with Levo makes you feel good - "Anyone would feel better on that amount of Levo!" they pronounce sagely - which is an absolute joke. Overdosing on Levo makes you feel awful.

  • Completely agree with all the comments above. Having a low level of B12 and a low vit D level will make you feel really tired and unwell. Therefore I would ask to go back to your previous dose of Levo and also address your low vitamin levels -it could be the low levels are the main culprit. Follow Martz links for the B12 and also go on the Pernicous Anemia site -they have an active forum on health unlock which you can search for and am sure you'll get great advice support about getting your B12 addressed. . Generally doctors are very poor at addressing vitamin dieficiencies. The B12 needs checking to find out what is causing the problem and needs to be corrected. You may have to do this your self if your doc refuses to.

    The vitamin D deficiency can make you feel terrible. Typical symptoms are fatigue, aching joints, pain and non restorative sleep -that is you wake u feeling tired. Look at the Vitamin D Couuncil website they have excellant sound advice.

    One thing I don't understand is that you mention you were on B12 injections before. How come they were stopped? B12 injections are for life. Were you diagnosed by another doctor and given them?

  • Hi

    My level dropped so low they gave me a course of 5 injections (I do know you are meant to have 6) and I was also to be tested to see if I had absorption issues. They gave me my 1st b12 injection and then did the test - I pointed this out to them that it should have been the other way round so of course it came bs j give. Anyway at the 4th injection I was so unwell at the time the doctor stopped the injections and said I have had enough to be put into my system to bring back into normal range.

    A month later I felt really well, everything seemed to work, the thyroxin, the Vit D etc even though my weight would not budge no matter what I did. Now when they test my b12 they just tell me I'm within normal so I can't have the injections.

    Honestly it was such a fight just to get these tablets.

  • I don't know as much about this as other posters, but I get the impression they are very stingy with the injections. It's possible to source your own and inject yourself if you can't find a better solution.

  • Oh my goodness that is absolutely awful treatment you have had by your GP! Definately contact the Perncious Anemia Society to seek advice about how to get this tackled. It does sound suspicious that you might well have it. Is there anybody else in your family with PA? As you said you felt well on the B12 injections this looks like the thing to tackle first. How long ago since you had the jabs?

  • Hi

    No one else in my family has PA, according to my GP I don't have an issue with B12 or be classed as PA.

    I last had injections Sept 2014 and that was it, the whole of 2015 I felt so well. I was only on Levo and Vit d.

  • Hi I had a similar issue with the GP and B12. I took B12 tablets and I bought my own sublingual drops. However with only a drop in B12 levels I finally persuaded him to give me injections. This helped enormously and I felt better after the 3rd loading dose. It took me 3 years to get the GP to agree to do this. I kept on bringing it up at every appt and requested a copy of my notes so that I could look back and see what my levels used to be before hypothyroidism. Best of luck. You need to try what they suggest and when it doesn't work ask for the injections. I can't understand why GPs are so reluctant when the cost is so low but the benefits are so massive. Good luck.

  • To find the Pernicious Anaemia Society community, go to this link :

    healthunlocked.com/pasoc

    Your story of them giving you a B12 injection then immediately testing you is absolutely appalling. You deserve better. The PA Soc members will have lots of info and advice to help you.

    You need to know that treating yourself is legal. There is nothing in law that says you are obliged to do what a doctor tells you. You can import medicines from abroad for your own use, and it is legal to do so, unless it is a controlled drug like tramadol or heroin. Vitamins, minerals, B12 injections, and thyroid meds are not controlled drugs.

    I treat my own thyroid and buy my own supplements. I've taken it a stage further and told my doctor I don't want thyroid testing any more. She has also given up testing my cholesterol since I have refused statins twice. Not being at the mercy of my doctor is very liberating. When I can afford to I do private blood testing (which doesn't require the permission or agreement of a doctor).

    You mentioned that doctors want you to go through weight loss surgery. What kind of diet do you eat? Do you try and starve yourself, or eat a low fat diet? If you do, this will make you feel worse and it won't help you lose weight. You would feel better eating a normal number of calories, which includes generous amounts of fat, and lower your carbs. People with thyroid problems should eat the healthiest diet they can and that includes not starving yourself.

    You might or might not be diabetic, it doesn't matter. In either case you may find this link very helpful - you don't have to be diabetic to benefit.

    diabetes.co.uk/lowcarb/

    There are sections on the website for recipes.

    And there is a forum at the same site (which you can join for free) :

    diabetes.co.uk/forum/catego...

    People discuss their low carb diet and many people lose huge amounts of weight without cutting calories.

    Hope it helps. I found when I increased my fat intake that my carb eating reduced without me being aware of it much, and that I lost weight without trying. And my depression is almost a thing of the past, and has reduced a lot. And my brain fog and memory problems have reduced immensely, and I can think so much better.

    Most, if not all, of your extra weight is likely to be caused by something called mucin, not fat, by the way. So cutting calories wouldn't work for you anyway. All I'm suggesting is that you aim to maximise your health, not worry about weight.

    There are lots of posts about mucin on this community. Perhaps you could read some of them for more information on what it actually is :

    healthunlocked.com/search/m...

    Good luck. :)

  • Thank you so much for commenting and providing the links.

    I eat well and healthy, I actually track what I eat so that I can evidence it all to my go and if my appointment for surgery ever turns up to show them.

    I walk over 15 miles a week, play tennis for over an hour twice a week and I struggle to eat much over 1200 calories a day as I'm just not hungry. I have 3 meals a day and that is it. I don't bother with "diet" foods as I know they are worse for you! Butter instead of margarine etc.

    I just think if I can be managed well, be on optimal levels for b12, Vit d etc this should help. However I am strongly considering ordering NDT fid myself as I know I can't get anything other than T4 from my GP.

  • you should get at least 1 set of thyroid labs, showing free t4 free t3 and reverse t3. Do you have hashi's? Dosing by TSH or labs doesn't work too well.

  • Unfortunately my NHS lab won't fund all of these so I'm going to have to do it privately.

  • i had to pay for most of my own testing. Many hundreds of dollars, plus supplements and meds.

  • Do you have Pernicious Anemia? It looks like you don't absorb B well.

  • According to my go I don't have PA or any absorption issues. However seen as my levels are dropping despite been on some form on b12 tablets I think I beg to differ. I will certainly be raising this with my GP at my next appointment.

  • You can still have PA even with a negative result. Please go over to their forum and check out Gambit and sleeepybunny - they have such good knowledge and helpful links.....

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