Surprising blood test results on small dose of levo.

[Caroline888]

Hello everyone,

Just come from GP with latest thyroid blood test result (TSH only of course 😕).

Was diagnosed in August 2017 with TSH of 8.8 (0.3 - 5.5) but not given any medication until two months later when TSH had gone down to 6. Had to push for treatment and was only prescribed 25 mcg levothyroxine. Six weeks later TSH down to 5.4 (0.3 - 5.5), then, after a further six weeks, down to 3.0 (0.5 - 4.4 - amended range) on 37.5 mcg levo. Finally today after six weeks on only 50 mcg levo my TSH is 1.7 (0.5 - 4.4). Quite a good result i think, but I'm still symptomatic. GP was resistant to allowing any increase (as usual) but did finally agree to a tiny increase of 8.3 mcg, i.e 50 mcg for two days then one day taking 75 mcg.

As can be seen from the above every increase has had to be fought for! Still it might be enough!

GP finally agreed to antibody testing (only thyroid peroxide antibody) although he considered it "totally unnecessary as the treatment is the same". Ignored my comment about going gluten free if positive.

Antibody result was more than 1300 iU/mL (0 - 60) so I guess gluten-free from now on. Since I am a vegetarian with high cholesterol (6.6) and newly diagnosed slightly elevated liver enzymes, it will be a challenge to find something to eat.😢

The GP has made it clear that this is likely the last increase he will allow and that he may well reduce it! Of course this tiny increase might be enough for me - fingers crossed! My ferritin is low at the bottom of the range but another doctor at the surgery has spotted this and asked for it to be retested. If she treats me for low iron, will this improve my symptoms do you think?

Apart from the never-ending tiredness, I still have intermittent discomfort In the thyroid area, tho not nearly as frequently as before starting levo, rib and sternum pain, general aches and pains and symptoms of carpal tunnel.

I am currently stocking up on levo in case I have to self-medicate in the future with the help of you knowledgeable people!! The next step will be to get my t3 checked and post my results on the forum.

Had anyone else has a really satisfactory result on such a low dose of levo or Is this TSH result likely to be misleading?

Sorry, I have rambled a bit. Any advice or comments would be appreciated.I

Best wishes to all

Caroline

[Jazzw]

Your GP sounds a bit of an idiot. 50mcg is only a starter dose of levothyroxine and it’s very unlikely to be enough. Is he only testing TSH? Because that’s not what he should be going by. Ideally, you need FT4 and FT3 results so that you can tell whether there’s sufficient thyroid hormone in your system.

I see you’re pursuing an FT3 test so that’s helpful. Do please post again when you have the result. When your iron (ferritin) levels are low it’s more difficult for your body to convert levothyroxine into the active version of thyroid hormone (T3) so levels need to be good when you have hypothyroidism.

[Caroline888 in reply to Jazzw]

Thanks Jazzw, yes, you are so right, he knows nothing about thyroid issues and is such hard work! I know the dose is small, just hoping it would do the trick since TSH has fallen steadily. Vit D is 108 nmol and B12 and folate slightly above range. Only ferritin is dire! Perhaps due to vegetarian diet! Hope to start improving it soon.

Thank you so much for taking the trouble to reply.

Best wishes

Caroline

[Jazzw]

You’d also benefit from having your Vit B12, folate and Vit D levels tested (low levels in any of those are common in folk with hypothyroidism and can leave you feeling lousy).

[Greybeard]

You could be better off with a different doctor who isn't so resistant to treating an underactive thyroid. The changes you have seen in your tsh could well be due to changes in your antibodies rather than what your doctor has been prescribing.

[Caroline888 in reply to Greybeard]

Thanks Greybeard for your quick response. I would definitely be better off with another GP but so far have not been able to replace my lovely former GP who retired before my hypo diagnosis. I think my relationship with this doctor is drawing to an end tho. He's not helpful.

You may well be right that changes In my antibodies are affecting my results. However I did respond very quickly to treatment for a severe vitamin d deficiency. I had a result of 11nmol and this was increased to 83 nmol in less than three months by taking 2000 i.U. vitamin d daily for a fortnight and then taking only 1000 i.U. The specialist was surprised how quickly my level rose. Might not be relevant, but I can't help hoping it's going to be that simple.

Thank you so much for taking the trouble to reply.

Best wishes

Caroline

[Redditch]

The cholesterol can be thyroid related, mine is now 2.2 on the correct meds, and I eat red meat and cheese every day.. are you taking vitamin C? and have you had your vitamin D3 tested? both of these can affect the efficiency of the thyroxine you're taking so you may see a marked improvement, I did..

I started on Levo and it did NOTHING for my symptoms but the bloods changed enough for my GP to tell me that my symptoms were in my head. He only said that once and I changed GP.

Anyway, Dr Barry Durrant Peatfield's book is very good, I started taking C and D ( some people don't get on with supplements) but I got on very well.

When my Vitamin D got up from 8 to 100 I felt much better, Vitamin C is very important in helping it all work together Dr Peatfield says 3g a day.. I only take 1g but religiously. I take 1000 i.u of D3 in the spring and Autumn and 5000i.u of D3 in the winter and I moved from Levo to Armour.

Your Antibodies means you're one of us, Hashimoto's people, so you're in for some fun, your doctor won't believe you or help, but we're here..

Good luck

[Caroline888 in reply to Redditch]

Thanks Redditch for your quick reply. I've seen in the list of hypo symptoms that high cholesterol and also elevated liver enzymes can be related to hypothyroidism. It's good to find that you agree with the cholesterol connection and even better that you have successfully reduced your level with the correct meds. That's great☺.

Folate, vitamin d3, Vitamin B12 are all optimal. Only ferritin Is low In range and needs sorting. Thanks for the Vitamin C suggestion. I will try 1g. Do I need to take It with a meal?

Thank you so much for your help and support. You're very kind.

Best wishes

Caroline

[Caroline888 in reply to Redditch]

Have just been looking on Amazon for the book you mentioned by Dr. Peatfield. Would you please let me know the title of the particular book you referred to. There appears to be at least two.

With thanks

Caroline

[Redditch in reply to Caroline888]

Sorry it's Your Thyroid and how to keep it healthy. I used it extensively in the early days, it was a great help

[Caroline888 in reply to Redditch]

Thanks very much Redditch. Glad you're doing so much better!

Caroline

[SlowDragon Administrator]

As you are vegetarian do you supplement B12 or vitamin B complex? If not you definitely need to get folate and B12 tested

Vitamin D too

Low vitamin D is extremely common with Hashimoto's

hypothyroidmom.com/92-of-ha...

Ferritin needs improving to help thyroid hormones work

Taking ferrous fumerate with vitamin C to help absorption. Your GP should prescribe

Getting these vitamin levels optimal will help

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

NICE guidelines saying how to initiate Levothyroxine and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

[Caroline888 in reply to SlowDragon]

Thank you so much SlowDragon. Yes my levels of folate and B12 are slightly over range. My vitamin d is 108 nmol. All thanks to supplements! My ferritin is dreadful but one of the other GPs is on it. Am hoping for some help there!

Thank you for the interesting links. I will certainly be buying some vitamin c tomorrow. Do you take this at the very same time as the iron supplement? And what dose should I take?

Thank you so much for your help.

Best wishes

[SlowDragon Administrator in reply to Caroline888]

No I haven't personally even taken iron. I always have over range ferritin (due to Hashimoto's too apparently)

But obviously many with Hashimoto's do have low iron and vitamin C always recommended. SeasideSusie can advise on dose

Your other vitamin levels are good

[Caroline888 in reply to SlowDragon]

Thanks SlowDragon. I am so grateful for your help.

Best wishes

Caroline

[SeasideSusie Remembering in reply to Caroline888]

Hi Caroline

With each iron tablet you should take 1000mg Vit C at the same time, it will aid absorption and help prevent constipation. I don't take iron tablets but do use a powder form of Vit C and add it to a small amount of orange juice and needs to be drunk through a straw to protect tooth enamel.

[Caroline888 in reply to SeasideSusie]

Thanks so much SeasideSusie. That's really helpful, especially the straw tip - don't need any more fillings!

Thanks again.

Caroline

[silverfox7]

I was only on 75 for many years and was good on it. Eventually I was on 125/100 and now on 1.75 grains of NDT so not very high on anything but I keep my vitsetc wherecthey should be.

I don't have antibodies though so may be that makes a difference

[Caroline888]

Thanks so much Silverfox. That's so good to know. I'm going to check my FT3 as soon as possible. If that is ok, then maybe I won't need a big dose of levo, or at least not for a while. Have Hashimoto's so am going gluten free. Perhaps, with luck, that and optimizing vits and iron will mean that current dose is not too far off the mark.

Thank you for taking the trouble to reply.

Best wishes

Caroline