3 1/2 weeks off Levothyroxine by endo orders then retest as my results were T4 9.1 tsh 0.04 T3 3.1 megaloblastic anaemia diagnosed

[Leomad]

Now 31/2 weeks off levothyroxine and on ferrous sulphate and folic acid. Feel rough as last few days. Cold, nauseous, pins and needles in legs feet and hands, extreme exhaustion falling asleep easily but struggling to stay asleep for more than a couple of hours. Very dry mouth and skin. Do you think could be due to coming off levothyroxine?

[Leomad]

Thanks for swift reply. I'm laying in bed feeling nauseous and pins and needles and keep getting cramps. All of these symptoms had near enough gone until was taken off levothyroxine. The dr and endo were confused by my results with everything being low so wanted to see what I was like without levothyroxine, to be blunt I feel like s**t. Can't even be bothered to get out of bed but obviously have to have husband and 2 dogs one being a 5 month old puppy. Next bloods this week so hopefully will get some answers.will post again then let you know what they say. Don't know what it could say really I've read on here could be secondary hypothyroidism etc but who knows. Dr really didn't have much of a clue and don't know about endo he specialises in diabetes and 'other' endocrine disorders!

[greygoose in reply to Leomad]

Do you have your results from when you were diagnosed? How much levo were you taking before it was stopped? This is an appalling way to treat a patient! What did they think was going to happen to you if your Free levels are below range when on levo, and they stop the levo! It doesn't matter why you are hypo, you still need that levo! I think your miserable endo is treating you like a guinea pig - oh, let's see what happens if we stop her levo! He should be locked up!

[Marz]

How much T4 were you taking ? Seems a strange protocol. If your iron and ferritin was very low then it could have caused the symptoms you mention. What were your levels ? Also B12 - Folate - VitD need testing ? Do you have TPO & Tg anti - bodies ? - aka Hashimotos ?

Even if you have Central Hypo you still need treatment. Hope you soon feel stronger ....

Edit: Have just read your post of 19 days ago when you were given excellent advice by SeasideSusie Clutter helvella - sorry to be bossy but you really do need to re-read their advice and follow it. I cannot see your post on the PAS Forum as suggested by helvella. The three people are all VERY knowledgeable and professional in their approach. They have given their expert advice freely 😊 I have been on this forum for six years and have gained huge improvements by learning from others who know more than me.

[Leomad in reply to Marz]

Thanks I did read their advice wasn't ignoring it, just getting frustrated at feeling worse as time goes on. Depending on results and what they say I may ask to be asked to referred privately to another endocrinologist. I will just wait and see.

[Marz in reply to Leomad]

So do tell us what advice you have followed - we are all here to support

[SlowDragon Administrator]

Suggest you email Louise at Thyroid UK for the list of recommended thyroid specialists and find another one quickly. Your current endo seems to be out of their depth

[e-mail]

Meanwhile also get full private blood tests done if GP will not test every thing

ESSENTIAL to know if you have high TPO and TG thyroid antibodies, as well as a TSH, FT4 and FT3

Also vitamin D as well as folate, ferritin and B12

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

[CSmithLadd]

You must find another doctor. Run as far away from the idiot Endocrinologist you are seeing, as they are in waters over their head.

Don't let Megaloblastic Anaemia worry you. The production of overly large red blood cells means that your red blood cell count is low and your body is attempting to correct it. However, it cannot -- not on its own.

The correction is to replenish the nutrients you lack that is causing the low red blood cell count and making your body produce larger than normal red blood cells to compensate. Simply put, this can be corrected by replenishing nutrients such as B-12 and Folate (and Ferritin), among others.

healthline.com/health/megal...

You don't need an Endocrinologist. What you need is a Nutritionist. The nutritionist will get your body back on track by replenishing the nutrients your body needs. That will take care of the Megalosblastic Anemia. Having ample nutrients in your body will more than likely also take care of your thyroid issues. A nutritionist knows how to deal with correcting any absorption issues you may have while replenishing your nutrients to optimal levels.

It is extremely common for hypothyroid individuals to have nutrient deficiencies. Nutrient deficiencies (including low iodine) are among the most common reasons for hypothyroidism to take a foothold. Without adequate nutrients for proper thyroid function and peripheral thyroid hormone conversion, the body suffers. You feel bad. And it will get worse until adequate thyroid hormone is available to your cells. When not available, dysfunction occurs throughout the body. This is why it is important to also know the cause of the deficiencies. Hypothyroidism causes low stomach acid and nutrients need ample acid to digest and absorb nutrients from the foods we eat and the supplements we take. It could that your hypothyroidism is the cause of it all as it cannot be controlled until the nutrients needed for thyroid function are replenished and maintained.

Also, surgeries and illness deplete nutritional levels (especially B-12) or even the medicines you take, as pharmaceuticals most often deplete nutritional levels.

Take comfort that the good people here at Thyroid UK are here to help you. You're in the right place.

Hope this helps!

[Leomad in reply to CSmithLadd]

Thanks CSmithLadd. More bloods to recheck in 3 days and counting I'll make sure they recheck all of my vitamins and minerals and my thyroid antibodies too as suggested