Am back but still need some help please.

[Fionna]

Hi all,

Right here goes. Long saga (past posts will enlighten you) but cut short.

Diagnosed with graves.

Thyroid removed 2011.

Instant reaction taking levothyroxine first day I took it, servere anxiety, swelling.

Consultants not interested carried on taking it 100mcg daily. Carried on working but felt so I'll. Hair falling out in handfuls, tired, intense head pressure, constipation etc, list goes on.

Changed consultants and advised to stop taking for a week, felt better but as the week went on I was feeling weak. I then started to take 100mcg again and oh boy my body went into complete meltdown. Servers nausea, anxiety 24/7 sweating. I was admitted to hospital for tests but they could not find anything wrong except being hypothyroid, gastritis, osophalgitis and hiatus hernia.

This was October 2012 which left me bedbound and I just wanted to die.

After seeing different consultants even having t4 injections, nothing worked.

Fast forward to last year. I saw another private consultant who said I wasn't converting well and said I needed t3. I reduced t4 to 75mcg and took 12.5mcg of t3 daily. Initially made a difference nausea eased but then my body went into meltdown again. Still all hypo symptoms joint pain, nausea, anxiety rec.

Fast forward to this year. I remember reading I think it was greygooses post about stopping t4 but take enough t3 to compensate then introduce t4 again. Well it's been scary and i was still so I'll (not forgetting my nhs consultant dismissed me because I saw a private consultant and was taking t3 with the t4 so I was alone).

Right here I am now. I am currently taking 125/100mcg alternate days of levothyroxine (No t3 at the moment as I wanted to see what my levels are at .

FT4 18.9 (Range 10 - 19.8)

FT3 4.0 (Range 3.5 - 6.7)

TSH 0.2 (Range 0.3 - 5.5)

My hair is so dry and still falling out (only a quarter of my hair left now, can see my scalp easily :o(. I still have hissing noise in my head. Can only sleep a couple of hours and wake with anxiety, body is red hot and louder hissing in my head. Scabs all over my body but mainly on my arms. Menstral cycle has stopped again. Itching all over my body. Head pressure, joint pain, dry skin but feels like a greasy film on it. But at least I don't have much nausea.

Now I saw my gp today and she said to reduce t4 to 125mcg then 100mcg for 2 days then 125mcg etc.

Now please correct me if I am wrong but won't that lower my t3 again?

Sorry for the long post but I wanted to give the full picture.

Any advise greatly received. I am taking d3 and vitamin b complex.

Fionna

[Nanaedake]

You say 'itching all over my body'. Have you discussed that with your GP? Get your kidneys and liver checked.

What are your latest vitamin B12, folate, ferritin and vitamin D results? Often I see people post here who are taking vitamin supplements but it's not bringing their levels up to where they need to be. If you post your latest results people will be able to help.

If those were my thyroid blood test results I would not reduce my levo unless I was feeling overactive. FT3 and FT4 are in range although FT3 is low and you're right that it will reduce your FT3 if you reduce your dose and ideally you'd like it to be higher.

[Fionna in reply to Nanaedake]

Hiya

Thank you for your reply. I have had numerous blood tests over the years including all you mentioned and I was found to be deficient in vitamin D. I took a loading dose for a couple of weeks and I am still taking a maintenance dose.

I have contacted my gp again and asked for these extra blood tests to be done with my thyroid blood test next week and yay she said yes. So i will be posting again soon with these.

[Nanaedake in reply to Fionna]

Often doctors will say our vitamin results are all ok because they are within the NHS laboratory ranges but results being ok in otherwords, you're not going to keel over and die tomorrow, get rickets or nerve damage are not the same as results being in a place where we feel well and begin to get better. The NHS does not have to treat if you've in range but we want to be optimal, not just anywhere in range.

All our vitamins needs to be mid-range, not coasting along the bottom and B12 needs to be top of range for our levothyroxine to work well. So do post your results because we've got some fantastic people on this forum who can help you check them out.

Is the hissing noise in your head tinnitus because that can be a sign of B12 deficiency? Your B complex may not be sufficient but wait and see what results say. Bear in mind you can be deficient anywhere in lab range.

[silverfox7]

As it's been upsetting you from day one could it be an allergic reaction? Medication has fillers in it to bulk it up and also to keep it stable is this is a common problem. During this period though have you kept to the same brand of medication? It's easy to rest for an allergy by taking an antihistamine tablet one hour before your thyroid meds and see if it stops the feeling. In which case you need to try another brand and once sorted always ask for that one.

Your results you have posted show you are converting badly so if you haven't any recent vitaminetc test it would be as well to get Vit D, B12, folate and ferritin tested. These help the Thyroid so much with conversation and it is possible to correct converstion that way by supplements. Many of us take supplements but the secret is not to stop them when levels are optimum but to find a maintenance dose to keep them there once you get those results then please post with rangers so others can comment as like your thyroid results irswgere in the range that matters.

Once you add T3 you can no longer use your results to tell if you have a good conversion rate as in situation only the FT3 is accurate. I corrected my conversion before I changed to NDT and have been pretty stable since. Now into my third year.

[Fionna in reply to silverfox7]

Hiya

Thank you for your reply .

My nhs consultant told me it was impossible to be allergic to t4. I have taken pure thyroxine which only has cellulose and I was no better on that. Although the private consultant said just by looking at me that i was allergic to it and like you said told me to take an antihisyamin before i take it. I have tried pure thyroxine but felt no better on that either.

I have managed to get my go to do another vitamin D, ferritin etc tested so I have a good starting point again.

[silverfox7]

Well knowing what is causing it and solving it are sadly two problems and you are t getting anywhere. Am I right in assuming that medication so far has been chemical? Or have you tried NDT? I understand there is a liquid version that doesn't have fillers in it but not prescribed routinely as it expensive so I wondered if you have tried that? I've also seen posters talk about Raw thyroid meds but have no idea what that is or in what circumstances it is used either.

All I can suggest is that you get your vitamins optimal and see if that helps or at least helps with the symptoms. More importantly what are the medical profession going to do? Improving vitamin levels doesn't happen quickly. Mine took about 5-6 months but get your D tested again to see where that is as well. Once you have some results and hopefully a treatment plan then please post as many doctors think that if you are in range then you are fine but like our thyroid results it's where in the range that matters. Sadly not all Endo'S know all the answers. Many are experts in diabetes but not that savvy which the thyroid.

I hope you get some help soon and can start to move forward.