Hi everyone. Im GC1906. Im desperate for validation. Because i think im going crazy.

[GC1906]

Hi Everyone. Im new to this community. But im not new to Hypothyroidism. Its taken over my life. Ive put on 4 st. Im taking a very low dose of Levothyroxine. 50 mg. Taking one pill a day for nearly 3 years. No matter what I say my doctor hasn't helped. I am now having another blood test. Its been 1 year since I was tested. My neck is swollen. I get food and water stuck. I have issues with the room spinning (im sober) I fall. Last week I fell. Hit my head and bit right through my lip. I was out for a few mins. I came round confused. My skin gets itchy. And ive had so many symptoms that my friends think im premenopausal. My mouth is dry. I drink 8 pints if water a day anyway but i also get a croaky voice all the time. I get hot. Really hot. The list goes on and on and on. Ive got so many symptoms. Somebody please help me.

[humanbean]

I have never heard of someone with thyroid disease drinking lots and lots of water. My suspicion would be that you have another condition in addition to a thyroid issue.

Does diabetes insipidus seem at all likely to you?

en.wikipedia.org/wiki/Diabe...

nhs.uk/conditions/diabetes-...

Another possibility... Do you avoid salt in your diet? Do you put salt in your food while cooking or after it is cooked? If you don't take in enough salt you could end up with low levels of sodium, a condition called hyponatremia :

en.wikipedia.org/wiki/Hypon...

Another possibility is low chloride :

en.wikipedia.org/wiki/Hypoc...

For more info on electrolyte imbalance which might or might not be relevant to you :

en.wikipedia.org/wiki/Elect...

If your problem is lack of salt another member some years ago asked for help with a similar problem to yours, which in her case was due to lack of salt in her diet :

healthunlocked.com/thyroidu...

...

Another thing that is obvious from your post is that you have been on far too low a dose of Levo for a long time. 50mg is a starter dose, and wouldn't be enough for any adult I've ever come across.

When people with hypothyroidism take Levothyroxine (aka T4) or other thyroid hormones it replaces their own thyroid output, it doesn't top it up. So you are surviving on just the 50mcg Levo. Normally a healthy thyroid would supply, each day, about 100mcg T4 with an additional 10mcg T3.

If you can't get your current doctor to treat you properly perhaps it is time to find a new doctor. The alternative is to go private, but I've never done that myself so can't help with the best way of approaching that.

[DippyDame]

Oh dear that is dreadful......no wonder you feel desperate. Your GP is clueless!!

Do you have any test results that you can post....you are legally entitled to request copies from reception at your surgery.

50mcg is just a starter dose that should have been increased after 6 weeks.to75mcg

The symptoms you list are examples of hypothyroidism, tick them off on this list. They are an important part of diagnosis

thyroiduk.org/signs-and-sym...

See another doctor or do pprivate blood tests at home

thyroiduk.org/testing/priva...

Test....TSH, FT4, fT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Testing should be done close to 9am, 24 hrs after last dose of levo and at least an hour away from food and drinks....except water

You also need to eliminate other health conditions

Do you take any other medication that might contrindicatet with levo?

if your GP won't help complain to the Practice Manager.....don't keep suffering.

We're all here to help....just ask.

[SlowDragon Administrator]

welcome to the forum

50mcg levothyroxine is only the standard STARTER dose

You are almost certainly not on high enough dose levothyroxine

Levothyroxine doesn’t “top up” failing thyroid, it replaces it. Almost every one will eventually need to be on full replacement dose (that’s approximately 1.6mcg Levo per kilo of your weight per day)

Book your blood test for early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Which brand of levothyroxine are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

If your hypothyroidism started after quitting smoking that suggests autoimmune

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator]

Many GP’s are clueless on how to manage hypothyroid patients

This is not a rare disease, almost 2 million in U.K. on levothyroxine, 90% are female

It’s however frequently very poorly managed

You will need to take control, get necessary blood tests and push hard to get dose levothyroxine SLOWLY increased

Get vitamin levels tested and thyroid antibodies tested at least once

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Britpol]

So so sorry to hear that. Find another doctor and get properly tested and treated You need a thyroid ultrasound, possibly biopsy of nodules if they find any , and a swallowing test to see if the thyroid has grown internally so much as to affect your swallowing. This then is the case for surgery. Be persistent . I suggest you research Endos and/or ENT surgeons and see them privately. In my case, it was s very good ENT surgeon specialising in sinus and thyroid surgery that helped me to investigate matters but I was referred to him after talking to an Endocrinologist first. Nothing much can be achieved through NHS consultations due to their catastrophic underfunding. Good luck!

[radd]

GC1960

Welcome to our forum,

Validation - yes, confirm every single one of your symptoms could be attributed to long term inadequate thyroid hormone levels and Hashimotos auto-immune disease. Have you had thyroid antibodies tested?

Weight gain and fatigue are classic symptoms but GPs don’t understand the effects on the brain (dizziness, foggy thinking, vertigo, confusion, etc) or more intricate knock on effect such as the skin issues (dry, itchy, etc), joint pain, the list is endless. Hashi involves own immune system attacking own thyroid gland and flu-like symptoms (hot and cold, achey, tired, etc). It is the most common cause of hypothyroidism and involves a swollen gland (goitre) and possibly nodules and cysts, and the swelling can make food difficult to swallow. I also experienced voice changes and a long term hacking cough.

A dry mouth is common on the forum, and can be due to Sjogrens (another autoimmune condition) or I’m sure mines due to adrenal issues. I drink a lot of water too, and if you crave salt, have some as electrolyte imbalances are also common due to poor adrenal function resulting from inadequate thyroid hormones.

I found once I was optimally medicated on thyroid hormone replacements, all ailments miraculously disappeared. It can be slow journey but you’ve already received great advice above regarding next steps 🤗

[posthinking01]

Hi there - your desperation is jumping off the page and brings back memories of my own issues back in the 1990's- I do feel for you - in my opinion you are not on enough thyroid hormone but I wonder if your blood tests are not showing that you need more which happened to me - I was sub clinical with Ord's which is slightly different to Hashi's and doesn't show up in the blood tests - although you say your neck is swollen which is Hashi's - someone mentions you are drinking lots of water - what I do know is that the kidneys can be affected by lack of thyroid hormone - and it may be that you are drinking a lot to give your kidneys a nudge - it is outrageous you are being left like this - do you take any other medication other than thyroid hormone and which hormone do you take may I ask? This is a wonderful forum and you should be able to find help and emotional support until you can sort out the issues with the medical profession - keep strong !

[Stefcon1]

Change your Dr. You are entitled to good quality care. Take someone in with you to the consultation . Drs take you more seriously if there is a witness and the person can corroborate how ill you are. Write a list of questions and your symptoms. Leave it with the doctor. Go in with information regarding your health.

It’s really hard to fight your own corner when you feel so poorly. I hope you get sorted soon. X

[serenfach]

I am so sorry you feel like this. No, you are not going crazy, but your GP is the crazy one. You are not getting the medical care you need and you are ill.

You may find your past results are available on line through your GP, but you can just ask for them and pick them up after a day or two. Bung them on here and we can help you further. I would suggest just concentrating on those results for now, let us know what they are and we can then help you get better.

Many of us have been told it is all in our heads and until we learn ourselves about this horrible disease, dont know any better. Many GPs are hopeless at thyroid issues, but this forum is brilliant at giving you a way forward. Sending a hug.