Help im struggling!

[magsyh]

Hi my gp has asked me to come off levo completely I had been up to 88mcg but was struggling with bad adrenaline rushes and hypoglycemia through the night so she said enough was enough as my tsh was at 0.4 (0.4-4.5) on only 75mcg the last blood test i had on 7th february. My ft4 was only 15.1 (9-20) All my hypo symptoms were a lot worse on 88mcg. And the adrenaline was scary. Thing is now im down to 50mcg and im really struggling, I was unable to go to work today. I cant physically or mentally cope. 2 days at work and im exhausted, hurt all over, banging headache, dry sore eyes and im so depressed! I feel unable to get out of bed. I think im not even capable of going to work so have just told them im not fit to carry on. If 88mcg makes me feel so bad and now reducing it makes me feel like a zombie what am i to do next? Ive had so much tested and doc now says after this 5 month trial of levo my thyroid is working fine as it was suppressed too quickly. My t4 and t3 are low even the levo doesnt perk it up? Any ideas?

[Marz]

I have quickly scanned your previous posts and cannot see if you have tested the following - B12 - Folate - Ferritin and VitD ... If you have those results - please do post them with ranges. Often thyroid hormones need good levels of those vitamins and minerals to work well and of course to make you feel well. Apologies if I have missed them.

[magsyh in reply to Marz]

Its a year since i had those tested. Ive been trying to keep my levels up as folate was on lowish side. Ferritin was on high side 118 if i remember. B12 was 500 something. I will try to find them and post them. Cortisol and dhea were normal. Ive had all my hormones tested by saliva and they are all normal too for my age. Im under a lot of stress but its not showing on my cortisol because of progesterone suppliment i have been told

[magsyh in reply to Marz]

Results from last year added thanks

[SlowDragon Administrator]

So these results are too old to be relevant now

You will need bloods retested after 6-8 weeks on constant dose Levothyroxine

How long since you reduced Levo?

Which brand of Levothyroxine are you currently taking?

Has it always been same brand?

Sounds like possible adrenal issues

Do you notice a difference in severity of symptoms between morning and evening?

Some people need to increase Levothyroxine very slowly or sometimes even block adrenaline with propranolol and in order to be able to increase dose of Levothyroxine

Your GP should refer you to an endocrinologist

please email Dionne at

[e-mail]

For the list of Thyroid Uk recommended thyroid specialists

[magsyh in reply to SlowDragon]

My last blood results 7 weeks ago on 75mcg of euthyrox were tsh 0.4 (0.4-4.5) and t4 15.1 (9-20) they refused t3 last time. Im due another test on monday morning now im down to 50mcg. My nhs gp is the one who wants me off levo. I also have a private doc as recommended by thyroid uk. He wants me to stay on 75mcg but i dont think its enough to keep my body going and it costs an arm and a leg and he does all the talking! Im taking vit d, k2, magnesium, vitc, vit a, selenium, thorne b stress, b12 and folate. Also hemp protein to boost amino acids. Im very sensitive to medication. Im gluten and dairy free and no hashimotos. But i feel absolutely terrible, depressed no energy, high anxiety.

[magsyh in reply to magsyh]

Ive been down to 50mcg for 3 weeks

[SlowDragon Administrator in reply to magsyh]

Which brand of Levothyroxine

Ever taken Teva brand?

If dairy free, you might need lactose free Levothyroxine. Teva is the only lactose free tablet. Other option is liquid Levothyroxine

[magsyh in reply to SlowDragon]

Yes thats something i have wondered about as dairy makes me feel terrible. I have got naturethyroid here 1/2 grain i have tried it but i bit scary as my body seems to get so excited over t3. What is the gene testing about? My sister is hypo and my grandmother was hypo sith pernitious anemia? I keep telling my sister to have antibodies tested but shes happy with what docs tell her she wont listen to me.

[SlowDragon Administrator in reply to magsyh]

So are you taking Teva Levothyroxine?

Or another brand. All other UK brands contain lactose

List of other brands available in UK

thyroiduk.org.uk/tuk/treatm...

DIO2 is a common genetic variation. You can inherit from one parent (Heterozygous) or both parents (homozygous)

If you test positive for having DIO2 gene, this is good proof you will almost certainly need/benefit from the addition of small dose of T3 alongside your Levothyroxine

thyroiduk.org.uk/tuk/testin...

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal

.

[magsyh in reply to SlowDragon]

Im taking Euthyrox its the European brand of thyroxine. My prescription is private. My gp doesnt approve she said i shouldnt be on it because my tsh was normal. They are not interested that my t4 and t3 were so low. If i have enough t4 i convert well but its getting that t4 to climb is my problem but nobody knows why it won't? As an example 3 years ago i was given iodine contrast. I was really unwell. They tested my thyroid. Tsh was 2.38. t4 was 13! But t3 was 5. I must have been converting like mad but i felt terrible. Since the contrast dye my tsh hasnt really altered it is like it hasnt any interest in pushing my thyroid to make t4 my gp says thats normal! Private gp says no i need thyroid hormone but because my tsh is low it takes very little to shut it down so im left with thyroid suppressed at 75mcg which is not enough to live on?

[SlowDragon Administrator in reply to magsyh]

Getting full testing again from Blue Horizon is likely next step

Consider getting DIO2 gene test

[SlowDragon Administrator in reply to magsyh]

Have you ever had ultrasound scan of your thyroid?

10-20a% with Hashimoto's never have raised antibodies

Gluten intolerance and dairy intolerance suggest its Hashimoto's

Consider DIO2 gene test?

Medically recognised DNA testing with compulsory counselling

thyroiduk.org.uk/tuk/testin...

Or wider "educational" DNA testing without counselling

bluehorizonmedicals.co.uk/t...