Lost ..no help from doctors

[Stardom69]

I'm in bad way at moment .. my doctors not give a hoot about me ...the tingling pain in body is so bad ..eyesight going ...every bad incontinence ....every forgetful ... so tried .. anxiety. .. itchy .. thrush a lot .... does any body know of any treatments or I worry I have endless diseases ..from thyroid ...

[jamesal0]

Hi Stardom. Not knowing you and without blood tests of more info it's a bit hard to know whats going on. But with me tingles and nerve problems is always too much Levo or NDT. Maybe just skip a few days and see if you feel better or worse. You then following your nose as to with which way to go take less or take more.

[SkyBelle in reply to jamesal0]

Yes, a great response, I listened to my body and experimented with my Levo dosage, no high BP, no tingling etc. Drs need a PhD in Thyroid complexity.to give helpful advice. Then you need a Pharmacologist, also, the fillers in Levo do not help and I choose to take a German brand which has the least fillers and got back to my normal self, took a while but the result great.

[posthinking01]

HI there - So so sorry you have suffering so - have you been tested for Diabetes because I was only reading yesterday which surprised me - that the body itches like mad even in the nether regions and I know you have to pass water a lot.

[JAmanda]

You may be under medicated. Get private thyroid tests done from eg Medichecks then that will give you a better idea what’s going on. You can get advice here once you share those results and what meds you take and also take the results to your doc.

[Marz]

Do you have any test results with ranges you can share ? - always a good place to start and may reveal something that can be worked on.

Vitamin and mineral tests - B12 - Folate - Ferritin - VitD ALL need to be optimal for your thyroid meds to work well. If B12 is LOW it can become a neurological issue affecting eyes and possibly the incontinence.

What is your current dose? Are you on any other medication ?

[SkyBelle in reply to Marz]

I take 75mcg daily of Wochardt Levo, also a quality Vit B complex on alternate days - nice thick hair! Alternate day 1 x 4000iu of vitD3. Lately, have increased my Levo to 100mcg but only twice weekly cos I am back on tennis court. Took 2 years to sort out, don't go near a Dr, am a very Happy Chappie

[Marz in reply to SkyBelle]

My reply above was to OP Stardom !!

Glad you are happy !

[Costindinu]

Order a B12 test. Should be 500 -1500 pg/ml (dr Bredesen in The End of Alzheimer’s page 122 (if you send the email address I can send you the pdf). In Japan optimum range = 677 -1761 pg/ml (500 - 1300 nmol/l). If below 300 pg/ml Supplement it with 5000 mcg methylcobalamine per day for 2 months, then 1 per week for life. If 300 -500 1 per day for 1 month then 1 per week (when feeling tired even 2 per week), Sublingual. When you want to check B12 level (after 4-5 months) be sure to have a break of B12 for 3 weeks. In a few days - no more tingling. Be sure your liver has no cirrhosis and no kidney failure (creatinine under 1 in females). Otherwise B12 will rise above the Japan upper limit.

[shortytlc]

Like a few have said about b12, but try and get a diagnosis before taking any b12 supplements as you would need to be clear of any b12 for at least 3 months to get a true reading and for majority of people tablets will raise levels but do nothing for symptoms, blood tests good to get b12, folate, intinsic factor,anti parietal cells, mma and homocysteine. Check the pernicious anaemia group on here.

Hope you get some answers

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking?

How long on this dose?

Do you always get same brand of levothyroxine?

When were levels last tested?

Are you currently taking any vitamin supplements?

When were vitamin levels last tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you know if you have had thyroid antibodies tested?

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Please add any blood test results and ranges if you have any

Or come back with new post once you get results and members can advise on next step

[Angel_of_the_North]

Tingling and poor memory are often a sign of low B12, and that can affect incontinence, too. A diet that is too high in carbs (and not enough protein and fat) for you can cause continuous thrush and affect muscle tone, and therefore incontinence - need to get Hba1c tested to see what blood glucose is doing

[Ginny52]

I don’t have very much that’s helpful to add, just this: don’t, please, be overwhelmed by the feeling they don’t care. I know what that’s like- my previous nhs endo was horrible as well as incompetent. After 3 years of searching, I found the one I’m with now, and I know he does care, it’s just that government bungling has made hospital care just about inaccessible.

I’m suffering a lot with the particular things you mention- and it’s my husband’s birthday. I’m struggling to stay awake, my hair is awful, and my eyes are to bad to put makeup on. I’m afraid he will think I don’t care. As for the other... god help me! The combination of the dryness with the constant awful thrush. I want to cry, which is not very birthday ish.

Where in the country are you? Xxxxxxxxx

[HLAB35 in reply to Ginny52]

Dryness of skin and hair is often due to low thyroid, so you may be undermedicated or poorly converting. If it's in the eyes, mouth and intimate areas then you may have something else - Sjogren's Syndrome which needs a separate diagnosis on top of Hashi's. It's a similar problem, but where your immune system attacks your mucous producing glands. It often occurs with Hashi's and Rheumatoid Arthritis. I don't think doctors 'get' autoimmune illnesses and that they often coexist in the same people. Some things that helps Sjogren's are diet low in 'trigger foods' and Sea Buckthorn berry oil capsules. Look this up. Thrush happens when our gut is overrun with Candida yeast which love sugar and things that can basically ferment - even fruit and grains. The toxins Candida produces from fermenting carbs in our guts can give us foggy brain. Taking Magnesium can help displace the toxins (see final link).

nhs.uk/conditions/sjogrens-...

thecandidadiet.com/

thecandidadiet.com/candida-...

[Ginny52 in reply to HLAB35]

I’m taking sea buckthorn, although not helping a lot yet. I do have magnesium spray- I will try using it more. The candida is unceasing misery. I want to ask my gp to prescribe oral treatment because I have so many different topical things, hrt gel, vaginal moisturiser, lubricant, hydrocortisone, Vagifem, etc, that topical Clotrimazole is just not helping, and I also seem to have tinea. She has been completely inaccessible, which is unhelpful but probably not her fault. My problems are pituitary rather than thyroid, and there are a couple of new dhea things that I have high hopes of......if I can actually get treatment!

Xxxx

[HLAB35 in reply to Ginny52]

I am definitely yeast sensitive, it's mostly under control now, but I still sneeze when humidity and mould spores increase. My symptoms were significantly worse when my stomach acid was low - another symptom of hypothyroidism, so low t3 could be your problem. Try the bicarb burp test from Dr Myhill on her page on hypochloridia. Also here's her page on Candida.

drmyhill.co.uk/wiki/Yeast_p...

[Ginny52 in reply to HLAB35]

Woo, thank you!

[HLAB35 in reply to Ginny52]

Dr Myhill is a really useful resource. Just remember that Candida die off raises acetylaldehyde in the body which is toxic - especially as it actually blocks thyroid hormone at a cellular level. Dr Carolyn Dean (Magnesium Miracle) shows that by taking well absorbed Magnesium it'll help combat the side effects of candida die off. Try Magnesium Citrate powder or Glycinate.

drcarolyndean.com/2013/06/m...

[Ginny52 in reply to HLAB35]

That’s a really big help. I had good results with Dr Mansfield long ago, and I think I’ll get nystatin and manage it myself- my gp surgery is just not helping much just now.

[Ginny52 in reply to HLAB35]

The candida has also made a lot of preparations containing glucose cues tormenting itching.

[Ginny52]

Also the gp surgery has totally pulled up the drawbridge, so that all these miseries do really make me feel I’ve outlived the comfort and usefulness of my body COMPLETELY ❤️

[snowma]

SlowDragon posted great links and advice.

I can't add any more medical info for you to research than what Slow Dragon posted. But I can relate my personal experience to you. You did not mention your age. When I felt like you describe - i.e. my body seemed to be falling apart all at once in my early mid 40's -unbeknown to me, I was going through several medical issues all at the same time:

- early stages of perimenopause and

- Hashimotos autoimmune thyroid disease and

- seborrheic dermatitis [ which impacts eyelids causing eye infections and temporary impaired vision and itchyness]

So you may need the services of a Functional Medicine Physician or an older experienced General Practice Physician , an Ophthalmologist [ if you've been susceptible to multiple eye infections], a Dermatologist, and a Gynecologist. My experience with an Endocrinologist was meh - I'll give him kudos for running the appropriate tests to diagnose my Hashimotos but he was mainly interested in diabetes patients and when he put me on Synthroid [ his fav!] together with a tiny dose of Cytomel, we parted ways. I had zero interest in morphing into one of the many diabetic patients sitting in his office due to my under treated/poorly treated Hashimotos. That was my experience with an Endocrinologist. Other people have had success. So you could try being evaluated by an Endocrinologist rather than by an older GP or FMP.