9 weeks since diagnosis. What next?

[DJ_1996]

After my initial results on April 12th ( see below) GP trialled me on 25mcg of levothyroxine. I was retested on June 2nd ( after 7 weeks) and as I still wasn't feeling much better my dose has been upped to 50mcg. I am taking supplements for Vit D, folate, ferritin and B12 as advised by people on here as Vit D was deficient and others were bottom of the range. So after 2 weeks at 50 mcg I'm still feeling tired and my weight is a disaster (in 18 months have gone from a 10 to a 16!). Is it worth trying gluten free? I know my GP won't increase levo again as results were all in range and when she tests me again at the end of June my TSH will no doubt be even lower. I have no idea what to do next and to be honest, spent most of the weekend in tears at the thought of feeling (and looking) like this for ever! Any advice would be really appreciated.

2nd June after 7 weeks on 25 mcg of levo:

THYROID STIMULATING HORMONE 3.21 mIU/L 0.27 - 4.20

FREE THYROXINE 16.88 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 127.5 nmol/L 59.00 - 154.00

FREE T3 4.78 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *275.500 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 16.74 IU/mL 0.00 - 34.00

Original test on 12th April:

TSH 7.56 (0.35 - 5.5)

Free Thyroxine 13 (9 - 23)

[shaws]

Never accept, 'normal' 'fine' or o.k. with regard to thyroid hormones. We need 'optimal' and optimal means we feel well with no clinical symptoms.

You have to get print-outs of your results with the ranges (labs differ) and ask for comments upon them.

Many doctors believe that getting the TSH back into the range is fine and patient needs no additional hormones. WRONG. The aim is a TSH of 1 or lower with the Free T4 and Free T3 towards the top of the range (they rarely do these important blood tests). For some reason they believe TSH and T4 will suffice. It might if we had no symptoms. Your GP is one of them as your latest TSH is 3.21 mIU/L 0.27 - 4.20 - too high. It has to get to 1 or lower and some of us need it suppressed. Doctors believe if it is suppressed we'll get heart problems etc, but we will if not on sufficient hormones. Your FREE T3 4.78 pmol/L 3.10 - 6.80 should be towards 6.

Before blood tests were introduced along with levothyroxine we were given NDT (natural dessicated thyroid hormones) until we were well with no clinical symptoms. Doctors diagnosed the patients by their clinical symptoms i.e. low temp, slow pulse, how they 'looked', unexplained weight gain etc etc. So it is up to us to read and learn and get well.

Going gluten-free can help reduce your antibodies as you have an Autoimmune Thyroid Disease caled Hashimoto's due to antibodies. The antibodies attack your gland until you are hypothyroid.

thyroiduk.org.uk/tuk/about_...

[shaws]

Ask for B12, Vit D, iron, ferritin and folate as we are usually deficient, and also cause symptoms.

[DJ_1996 in reply to shaws]

These were my results in April and at the time I was given great advice on here about how to take supplements. I know it can take a while to raise levels and as I'm not quite sure when I can expect to see/feel an improvement I was reluctant to pay for more testing just yet as it seemed a bit soon.?

VITAMIN B12 154.4 pmol/L 140.00 - 724.00

FOLATE (SERUM) 4.02 ug/L 3.89 - 26.80

25 OH VITAMIN D *25.41 nmol/L 50.00 - 200.00

IRON 12.19 umol/L 6.60 - 26.00

T.I.B.C 74.09 umol/L 41.00 - 77.00

TRANSFERRIN SATURATION *16.45 % 20.00 - 55.00

FERRITIN 42.82 ug/L 13.00 - 150.00

[bluebug in reply to DJ_1996]

You should be able to get your Vitamin D up a lot in 3 months if you took the supplement dose someone here would have told you to take. This means your next vitamin D test would be sometime in July.

Retesting serum vitamin B12 is pointless if you are supplementing you need a full blood count or active B12 test.

Are you supplementing iron? If so you would need to test your ferritin as a minimum but preferably with a full blood count as well in 3 months. This is because some people react quickly to iron supplementation. You don't need an iron panel in addition every time you check your iron levels, though if you feel terrible it is worth getting.

Stop taking iron and any B complex a week before the nutrient and full blood count tests, with ceasing vitamin D about 48 hours before testing it to ensure you don't have false positives.

If you only retest thyroid hormones then stop taking B complex about 5 days before testing. This is because biotin in B complex supplements gives false readings of thyroid hormones and some other measures.

[Raventhorpe]

Hi sorry your feeling a bit despondent at the moment, after only 2 weeks on new dose it's too soon to feel the full effects, you need to give it at least another 4 weeks before you feel any difference then have another bloodtest to see where your levels are then and how you feel. 50mcg is still a small dose so you might need another increase, if you have problems getting gp to up dose suggest you get the article dr toft wrote that was in pulse magazine you can get it by emailing [e-mail] and asking for article by dr toft in pulse magazine which says that tsh should be 1.0 or below and t4 should be in top quarter for most of us to feel well. He's an eminent endocrinologist and past president of the British thyroid association so knows what he's talking about. I showed my gp this and it worked I Got an increase in my meds.with the thyroid everything takes time and you can't rush it so I'm afraid you will need to be a it patient it can take awhile to get to the right level of medication.as you have hasimotos then it's worth trying to go gluten free as lots of people on here have found its beneficial it helps with any stomach issues you might have and people have found they feel better for it.i can't speak personally about it as I've not got hasimotos.try not to worry about your weight at the moment you need to concentrate on feeling better first an getting you levo at right level first once you've done that then you can try to lose the weight you've gained. You will feel better you just have to give it time.

[DJ_1996 in reply to Raventhorpe]

Thank you - I will get that article to show my GP as she is absolutely lovely to be honest. Just not sure how clued up she is on thyroid issues! I know I have to be patient - I think having nothing that I could wear in the heat this weekend was the final straw for me. I've never been overweight in my life (I'm 50) so I'm really struggling to come to terms with the sight I see in the mirror!

[Raventhorpe in reply to DJ_1996]

I know what you mean I put on 4st over a couple of years after having RAi which made me hypo and then l got my levo at right level managed to loose all the weight on the 5/2 diet then gp says I'm over medicated drops my dose twice on me and made me really unwell and I put a stone back on and felt really depressed which is when I found this wonderful forum which has helped me so much and now I have got my meds back to right level and am trying to lose the stone I gained. I've just seen your vitamin levels no wonder you feel unwell as all of them are pretty bad so that can also have impact on your health.

[shaws in reply to DJ_1996]

The email for Dr Toft's Pulse online article has an a in the email address i.e. [e-mail] Raventhorpe has accidentally put an a instead of s in roberts.

[loobieloo123]

Dear DJ-1996

Poor you. I know just how you feel and I know just the sort of response you are getting from your doctor. There will be some really useful help from members on here and the Admin Team. I can't really help on the blood tests but I have learned that in order for you to feel well, your TSH needs to be nearer or less than 1. I found myself a really good endocrinologist, paid for a couple of visits, he did blood tests and upped my Thyroxin. I have now found out that Thyroxin doesn't really cut it, it stores the energy but it isn't much use storing it, you need to be able to use it! I am now on Armour Thyroid, there are other manufacturers producing these natural tablets taken from the pituitary gland. I am beginning to feel much better in myself, the crying has stopped, the brain fog has stopped. I am getting increased levels of energy and becoming less tired. I am so glad you found this site. You will get some very good advice on here. Hang on in there, there is life after being diagnosed hypothyroid. Keep your chin up, I know it's hard. xx

[DJ_1996 in reply to loobieloo123]

Aw thank you. This site has been a godsend. So many lovely people on here taking time to post is making me feel better I have to say. xx

[loobieloo123]

sorry pituitary gland of pigs x

[eeng]

95% of normal people (without thyroid problems) have a TSH between 0.5 and 1.5. This is the result of a Norwegian academic study. This is why your doctor should be aiming to bring your TSH down to 1. Some people feel best with their TSH below 1. The range for TSH (0.27 - 4.2) is for diagnosis, not for treatment.