Needing some help

I have been hypothyroid for 22 years with a diagnosis of Chronic Fatigue Syndrome was started on 25mg starting dose Levo about 5 years later doctor put me up to 50mg after I complained that I was still so unwell. I also had a B12 blood test which showed over enlarge red blood cells. Doctor did nothing about this was convinced I was a secret drinker, I don't even drink! I have had to adapt my working like quite a bit, and have never felt well. I was never told the protocol for taking levo so just use to take once a day (any time) and with meals. I was also diagnosed with osteoporosis 4 years ago.

I have been on a 70% organic diet the last 15 years and grass fed meats. Have no energy in the at all until about 4pm in the day and feel pretty good in the evenings.

A year ago I read about taking it before bed, this I started to do and all the dreadful morning brain fog disappeared along with the low lying headaches. I also started to supplement with vitamins and minerals, especially Lugols iodine, C, E, D3, K2, Selenium, B100's, Zinc and copper, fish oils, evening primrose oil, Dhea, Ashwagandha, transdermal magnesium, amino acids, msm, and calcium. Started to fell pretty good, still not too great mornings, afternoons got better, evenings the same. I did so charka work to open up my heart energy and kick start my mitochondria. Tried D-Ribose but not good for me.

I even started to do a little exercise and could run on the spot for 5 minutes a couple of times a day. I felt my muscles getting stronger. This was amazing to me.

I had the normal blood tests but asked for B12 and Vit D this time (vitamin D never been done before) telephoned the doctors, receptionist read out the results, all normal. A light bulb went off in my head this time and I said I would like to make an appointment to see the doctor. I saw her and asked for the readings of my results.... TSH 5.42, T4 15.9, Vitamin D 96, B12 669, Iron Ferritin 106.5....she would not do T3 or reverse T3, could I ask someone to look at these results for me, your input would be so appreciated.

The worst thing I have done was come off of Levo about 2 weeks ago, I felt really good for about 8 days, then I started to hit a wall, crash and burn. Pains all over body especially in knees, headaches, total exhaustion, tingles and pains in arches of feet, intermittent pain in ear, dark moods. The good thing the last quarter of my eyebrows started to grow back and my hair stopped falling out.

I had ordered Nature-Thyroid from the web (my doctor won't prescribe it). 60mg half in morning half in afternoon. I still don't feel good though, so I am supposing it has to get into my system, very tired all the time and joint pains especially knees and thighs still bad. Sorry I wrote you a book :(

24 Replies

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  • I am sorry you have not had a good experience with doctors. Giving you only 50mcg of levothyroxine which is usually a starting dose and allowing your TSH to rise to 5.42 is negligent I believe.

    The fact that your TSH rose on 50mcg shows that it was not sufficient. Your other blood tests seem fine but others might respond too.

    You are taking 1 grain (65mg) of Nature Throid which is equal to about 100mcg approx of levo. If you are on NDT you can increase the dose slightly every 2 weeks until you feel much better. Take note of your pulse/temp and keep a record. If temp goes too high or pulse too fast, reduce back slightly.

    It's not good to go 'cold turkey' with levothyroxine or any thyroid hormones as you have found out. It's always good to have a transition from one to another.

    I personally would take my thyroid hormones in one dose first thing as Dr Lowe's patients were directed. If you go to the date November 21, 2003 on this link you might find it helpful:-

    web.archive.org/web/2010103...

  • Thank you shaws sorry it has taken me so long to reply I have been so unwell, even sitting at a computer is exhausting me. Thank you for the link I am going to have a look now.

  • I am sorry Katherine 123 that you've been so unwell. It is quite strange to me how many doctors think that if we take one pill a day that fixes our thyroid hormones (because the TSH says so), whereas in many cases it doesn't and they are willing to give us any other meds for the 'symptoms' rather than a decent thyroid hormone and dose.

    I hope you feel better soon.

  • Thank you shaws :) xX

  • Hi Katherine123

    As far as I know your TSH of 5.42 is too high for someone diagnosed hypothyroid, you are undermedicated an increase of levothyroxine might be all you need. If you continue with your NDT increase slowly as per these protocols.

    tpauk.com/main/?page_id=686

    stopthethyroidmadness.com/m...

    I too was diagnosed Chronic Fatigue Syndrome and funny enough a lot of my symptoms are a lot better (not perfect) since starting NDT in July. I have just recently got to 2 1/4 grains.

    Good Luck,

    Someone more knowledgeable will come along and comment re: you vitamin results.

  • Sorry it has taken me so long to reply wightmouse I have been so unwell, even on a computer is exhausting me. I have been on 1 grain, half morning early evening for nearly 2 weeks, I will try going up a quarter tomorrow. Thank you for links darling...

  • Katherine, you were very undermedicated to have TSH 5.42 and probably needed between 75-100mcg Levothyroxine (T4). There was no need to stop taking Levothyroxine, you could have switched to NDT straightaway. 1 grain (65mg) NDT is equivalent to 75mcg-100mcg Levothyroxine (T4). The T4 in NDT takes 7/10 days to be absorbed but the T3 will be in your cells within 36/48 hours and should help a little in the meantime. You should stick with 1 grain for two weeks before increasing by a quarter to half a grain. Ideally you will have a FT3 test 6 weeks after you have been on 1.5-2 grains to check levels before increasing further.

    Vitamin D 96 is good, optimal is 75-200 and most of us are happy around 100. B12 669 is excellent. Iron Ferritin 106.5 is good, optimal is halfway through range.

    I hope you feel better soon.

  • Hello Clutter sorry for taking so long to reply I have been feeling so unwell. I have been taken 5000 iu's of Vitamin D most days for the last 6 months, 2000 sublingual B12 most days, not taken iron though but made sure I have been eating organic grass fed beef liver once a week and have been taking organic black strap molasses on and off. Not sure what you are saying with the Iron Ferritin darling am I too hire at 106.5?

  • Katherine, you didn't include the range for ferritin so I don't know. Half way through range is optimal but I doubt 106.5 is too high.

  • Cutter I just googled the range of iron ferritin and it says •Female: 12-150 ng/mL the doctor said mine was 106.50 and that is was good.

  • Katherine, I haven't said your ferritin isn't good. I don't think 106.5 is anything to worry about. I've said optimal is half way through range, by which I mean the range your lab uses which may be different to the range you Googled.

  • Ah! I will have to ask the doctor for that and let you know Clutter, she was reluctant to give me anything, other then saying all normal, which half of the blood tests weren't :(

  • Katherine, it might be easier to ring the hospital biochemistry or pathology lab and ask them for the ranges. I really wouldn't worry about 106.5 though, even if it isn't half way through range it's good.

  • Katherine, your doctor was extremely negligent to leave you on 25 levo for 3 years! She should have done bloods after six weeks and increased your dose! She obviously knows nothing about thyroid.

    You say you're taking iodine. Were you tested for iodine deficiency? Not all hypo is caused by iodine deficiency, you know, and taking iodine when you Don't need it can do more harm than good. I would advise you to get your iodine and selenium tested, if you can.

    Have you had your antibodies tested? You could have autoimmune hypo. It's always good to know why you are hypo if you can.

    Hugs, Grey

  • Hello Grey sorry its tool me so long to reply I have been so unwell. Will a doctor check for iodine and selenium. I have been taking selenium along with Lugols iodine and lots of other supplements for the past 6 months. I had begun to feel so well, really well! my local shops are 9 minutes work away and normally you might as well have asked to walk to Australia, but since feeling so well I could just 'go to the shops' before that would have taken me hours of trying to get the energy and get my self ready to go! then I would not have been able to anything else all that day and all the next. I think after feeling so well for 3 weeks, this now feels such a kick in the teeth :(

  • Well, that's iodine for you. It stimulates the gland to make more hormone, but stimulating a sick gland is not a good idea, because it just hastens its demise. Been there, done that...

    Doctors rarely test for anything much - except things that are totally irrelevant! - unless you ask/insist. I Don't know if they will test for iodine in the UK, I live in France. They will do a blood test for it here, but you really need a urine test. But even if you are iodine deficient, you should really be supervised by someone that knows something about it, not just take a supplement. And if you do have Hashi's, it's really not a good idea to take it because Hashi's isn't caused by iodine deficiency. That's why I said it's always good to know why you are hypo if you can.

  • Good morning greygoose I asked my doctor if I had Hashi's a couple of weeks ago! she said no you just have an underactive thyroid but your TSH is 5.42 (range is 0.35 - 5.5) so you are ok. Your T4 is 15.9 (range 10 - 19.8) so you are ok. I have accepted this over the years, but now lurking on Healthunlocked for a year and Thyroid Uk I now know she does not know what she is talking about. To be fair she did hold up her hands and say I don't really know much about hypothyroid.

    My aunt and uncle live in the south of france greygoose and their healthcare is so much better than the Uk.

    Katherine xX

  • She wouldn't know if she hadn't tested it! It's not printed on your forehead! lol Ask for the tests - TPO and Tgab. If either of those are elevated, you have Hashi's. You can't tell from the TSH or the T4. Is your TSH still 5.42??? If so, you are grossly Under-medicated!

    I live near Paris. I wouldn't go mad about the healthcare. GPs are just as ignorant as British GPs, especially when it comes to thyroid. Some things are better, such as you Don't have to have a doctors referal to see a specialist, and waits to get into hospital are much shorter, but apart from that...

    And NDT and HGH are illegal!!! So that's a big black mark against them!

  • Hello grey yes it was 5.42 2 weeks ago when I saw the doctor. Thank you for information darling I will try and get her to test for TPO and Tgab.

    My doctor will not prescribe NDT I had to order it from America been on it a week now 1 grain, half in the morning, half late at night. Still not feeling good, but I will slowly up it as per the protocol for NDT. I will probably have to go to a private doctor in London to get this sorted out.

  • It will take a while for the NDT to take effect, and one grain is a low dose, so patience is needed! I'm sure you'll get there in the end!

  • Awww! thank you darling you have put it into perspective for me because I was only taking 50mcg of levo, I was thinking one grain of NDT was quite high and thinking why am I still feeling so bad. I have to also remember I was 3 weeks without levo before I started NDT so it probably has to build back up in the bloodstream xX

  • I think it does. And if you weren't converting that Levo correctly, you would have been very low on T3. NDT will change that when you get on your optimal dose. xx

  • I have been hypo for twenty years and had m.e diagnosis four years ago. I have spent 60% of my life in bed over the past four years. I would advise you to get a saliva stress test to measure cortisol it can impede in take up of t3. I have finally started to see movement forward after trying everything else by going t3 only and finally taking hydrocortisone to replace the cortisol that is very bound in my blood stream. Now I am virtually symptom free apart from tiredness and a couple of other cortisol issues, but I have dropped or improved twenty other symptoms. I now realise that several big operations had effected my adrenals but not in the way the nhs thinks and this in turn was impeding my t3 take up, I was on 175mcg t4 and 20 t3, leading to a massive meltdown, and then low t3 lowered my cortisol more. Vicious circle. Get it checked and post for help with results.

  • Hello Sulamaye thank you so much for your reply I sorry it took me so long I have been so unwell even a computer is wearing me out. I never thought of adrenals but it could make sense as I did expect to start to fell better on Nature Throid by now. I will see if my doctor will check for me.

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