Hashimoto's: Hi, I hope you guys that are... - Thyroid UK

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Hashimoto's

bubbatetley
bubbatetley

Hi, I hope you guys that are suffering with this debilitating disease are hanging on in there. I am in a terrible place and am very ill and need to chat and off load, so here I go..

I take Wockhardt Levothyroxine alternating 50-75 daily. My symptoms are getting worse, heat and cold intolerance, for the last few weeks I have been sweating profusely always using cold ice packs whish I too take to bed.. Insomnia and desperate to sleep.. Constant overactive bladder and bowels having to rush to the loo every half hour to one hour all through the night, then sitting on the loo for ages with a feeling of my bowel not being emptied, which causes me to be on the loo for ages.. Itching all over from head to toe especially my eyes which are now being treated for dry eye.. I have stopped all the eye meds as I found my eyes so sore, red and terrible pains in them both.. They seem better without all the drops and ointment and they were prescribed by an eye specialist at the Hospital.. Memory, well I can't remember what the day is, where I have put things and such terrible brain fog.. depressed, emotional, anxious, suicidal thoughts thinking I can't suffer anymore , this is living hell.. Mouth has no Saliva, with a thick white tongue, bleeding gums and ulcers.. Loss of eyebrows and hair falling out.. complete loss of appetite with the sight of food and smell making me nausea..Only existing on a couple of crackers daily, even them Im not wanting, but I false myself.. Heart palpitations with chest pains especially at night.. Ridged pitting fingernails and extremely thick skin on both hands.. Skin on feet bleed and very dry thick skin... The List of health problems seems to change daily and seems to flit around..Numbness in two fingers and right numb thigh..

PHEW!! I am now waiting to see another Endo, as my previous one is useless and not interested in my million and one symptoms..

Thank you all for being here and taking the time to read my depressing story.. I have been thinking whether to stop all my Levothyroxine to see if it helps not taking them.. has anyone ever stopped their medication..

Good luck to you all

Take care

Bubba

I

13 Replies

I like knowing if you are a male or female but anyway you are in tough shape. When you have an autoimmune disease that is undertreated as well, things continue to get worse. I've made lots of notes about autoimmunity and just watched another series. You probably know this is all about leaky gut and your immune system. It just targets your thyroid gland because it is so sensitive. You could be causing stomach inflammation with either gluten, dairy or corn. The pesticides on the grain is killing our good microbes in the gut. You've piled up all these immune remnants in your bloodstream because your liver is being overwhelmed. If you can take some steps you can get through this. Stopping these foods now and if you want to give your body a rest go on a water fast if you can handle it. You also need to take digestive enzymes or Betaine HCL with meals to break down those particles and digest them. There are supplements you can try later. You are on a low dose, so how are your thyroid tests? Anywhere near normal? You should probably be on selenium and vitamin d3 if you aren't already. You can definitely work back from this with some effort. I'm sure each day is a challenge, I know how bad this illness is.

bubbatetley
bubbatetley in reply to Heloise

Hi Heloise. hope you are well.. I am a female just about I think.. What a terrible week I have had feeling so very ill and in total despair.. My symptoms are still horrendous and I am getting worse too.. Insomnia is terrible and so very hot.. Extreme bladder and bowel movements.. If you read my other post it will give you more info, rather than me repeating oneself.. I am going to see a new Endo on Monday, just hoping she can help me , otherwise its the end of the road for me.. Can not live this way anymore , it's killing me this awful Disease, in more words than one.. I am off to see my Acupuncturist today and I always feel so relaxed with him.. I now have numbness in my upper thigh and tingling sensation all over the body accompanied with uncontrollable itching, which he is addressing at the moment.. I not sure if any of this Alternative treatment will work , but hey ho its worth trying,, He is releasing all the Meridians in my body.. My Ranges to date are;

TSH> 0.07

Serum free T4 > 13.2

Antibodies>82

Serum free triiodothyronine level > 4.1

Serum cortisol level 399

Heloise
Heloise in reply to bubbatetley

I'm away for a few days but the others are good at explaining the thyroid issue, I just want you to keep in mind that you have to deal with the autoimmune attacks. Your cortisol looks very high so if you have the ranges check it out. Same with t4. This effects the nervous system badly. I used to get terrible nerve pains, worse when drinking anything acidic. Restless legs very bad also. Taking calcium/magnesium at night helped a lot. A lot of this is about diet and nutrition. You will feel better. Meditation and yoga with acupuncture can help.

One of the admins will answer you I am sure but in the meantime you must get hold of your most recent thyroid blood tests and post them here under a new post. It appears you are very undermedicated but only tests will show the real story. I suspect you are also low in various vitamins so these need testing: iron, ferritin, B12. Folate, Vit D plus thyroid antibodies.

Do not despair. You will get excellent advice here and begin to move on but you must have all these results before anyone can give sensible “words of wisdom”.

Hi Bubba,

So sorry to hear you are so unwell. I too have Hashimotos. However, I also have pernicious anaemia (b12 deficiency). Some of your symptoms really sound like b12 deficiency so if I was you, i’d get this tested ASAP.

It is really dangerous to leave it. Most doctors do not treat it adequately and many of us have to obtain B12 and inject it themselves if the have lost the ability to absorb it.

You may like to look at the pernicious anaemia forum too. It is quite common to have both diseases.

There are a variety of vitamins and minerals that you need to keep optimal too for things to work a little better.

Good luck, hope this helps.

Karen

Just want to say; hang on in there. Force you mind to imagine a healthy future and visualise yourself feeling good. It Will happen with the right treatment-I believe! Good luck with your new endo.

SlowDragon
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

You are on very low dose of Levothyroxine

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested, vitamin D, folate, ferritin and B12 tested.

Low vitamin levels are extremely common, ask GP to test, plus thyroid antibodies

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

Dose should be increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Bloods retested 6-8 weeks after each dose increase

dinahnow
dinahnow in reply to SlowDragon

Is there a 'piece' I could copy and take to the doctors surgery - today I requested to know my blood test results when with the doctor - 'Oh, they're all normal'. Yes, but could you tell me what they are please? 'No, we don't do that'. (This is in Shropshire, UK)

linkit
linkit in reply to dinahnow

Have they not heard of GDPR?? Since May this year they have HAD to do that it’s the law! Google GDPR and patients records you will get all you need. But I bet you once you mention GDPR you will get them. It’s shocking to hear that practices are still denying patients access to information about themselves!

SlowDragon
SlowDragonAdministrator in reply to dinahnow

Ring the receptionist and say you would like to pick printed copies of your recent blood test results and ranges

You need to allow a day or two, for them to print out

If she says, why or can't, or they want to charge a fee, just say since to new GDPR data rules changed on 25th May this year that you are entitled to copies of your own blood test results for free

HI SlowDragon.. Thank you and hope you are well.. My symptoms are increasing and went to have Acupuncture yesterday.. Now getting lots of numbness in fingers, feet, both legs and face..

My recent blood results are

Serum Free T4> 13.2

Serum Free T2> 4.1

Serum TSH> 0.07

Serum cortisol > 399

SlowDragon
SlowDragonAdministrator in reply to bubbatetley

Sorry we need the ranges on these results

TSH is very low

But FT4 and FT3 look low too (need ranges to be sure)

Ask GP to test vitamin D, folate, B12 and ferritin

These are very very often too low

They need to be optimal so that thyroid hormones can work

Has TSH always been low?

SlowDragon
SlowDragonAdministrator in reply to bubbatetley

You need to add the ranges on these results, the figures in brackets after each result

Every lab is different

TSH obviously low but FT4 looks low too, but that depends on the lab range

Eg

FT4 13.2 (12-22)

Ask GP to test vitamin D, folate, ferritin and B12

Low vitamins often cause low TSH despite being on too low a dose of Levothyroxine

Or test privately via Medichecks or Blue Horizon as detailed above

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