Had brain surgery in 2014 (3rd Ventriculostomy) for Cavernoma on Brain Stem that had caused Hydrocephalus. Following which my previous good health deteriorated rapidly. The surgeon was and still is brilliant and supportive. Pity can’t say same about GPs. (He misdiagnosed brain problem as labyrinthitis). In 2017 I had an allergic reaction where my left cheek and neck swelled up and my tongue swelled too. I found it difficult to breathe and husband took me to AE. They were brilliant and got swelling down. Subsequently I went on to have another 6 to 8 episodes before I was able to see an endocrinologist. They initially thought I had suffered an anaphylactic attack but results of blood tests proved antibodies attacking my thyroid. Back to GP. and prescribed Levothyroxine.
Dose now 225mg. Episodes with swellings continued regularly but Gp would never see me when they occurred as no appointments available. Kept pestering and referred to maxillla-facial clinic. That proved to be a telephone consultation due to covid. No diagnosis. GP then said he didn’t know what else to do and what did I think! I insisted on further blood test for level of antibodies to check for Hashimotos. He said he couldn’t just stick a needle in my arm for no reason but if I insisted he would order a test. Following this telephone consultation he rang back in 5 minutes to tell me that after checking my records I had been diagnosed with Hashi in October 2018. I still have occasional face swelling whic Endo has prescribed Prednisolone . I am totally fed up and so unwellwith 95% od thyroid symptoms and no help. I have not been given my blood test results but after begging for a VIt D test was prescribed a very high 7 day dose. Sorry to drone on but its helped to get it off my chest. Maybe cos I had my 70 birthday recently I do t matter to NHS anymore.
Written by
Majormark
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Sorry you have had such a terrible time. Thyroid patients often say their care is not good you are not alone.
225mcg is not a low dose.
Normally wouldn’t expect to need that sort of dose unless extremely active or very tall & heavy.
How do you take you medication? With water away from food, hot drinks & other medication & supplements?
Do you always have the same brand?
To help accurately advise you further you need to get hold of your blood test results.
You are legally entitled to you results. Once a doctor has looked at them they are usually marked “filed” on system and you can view them.
Does your practice have online access is very useful if your practice offers, ask for full access including historical record. If not approach practice reception and obtain copies & don’t accept verbal or hand scribbled notes you need a printed copy, this will have sample date & ranges (ranges vary between labs so essential).
For full thyroid function you need
TSH Thyroid stimulating hormone.
FT4 (the free thyroxine)
FT3 (the free triiodothyronine)
Sometimes medics go by TSH alone. This is a pituitary hormone not a thyroid hormone so important to check.
TPO & TGab are two thyroid antibodies. We know from your post both or one of these were positive in 2018 which confirms hashi so NHS are unlike to repeat the test.
Also important to test Folate, ferritin, b12 and vit D. If these aren’t optimal (not just in range) levo will not work well & they often become low if you have thyroid issues.
Your Vitamin D is a example of this. If very low doctor will supplement to bring into range but you may need supplements longer.
If your doctor refuses to fully test there are private companies. First step see what’s been tested so far & what the result are.
When you have a blood test it’s recommended to have it drawn early in morning, fasting overnight except water. Delaying dose until after draw. Gives highest TSH lowest FT4. Doctors often unaware of this or don’t think it’s relevant.
Do you take any supplements containing biotin, as high doses can skew results, check all labels.
First step is to get FULL thyroid and vitamin testing done (usually this has to be done privately)
Do you always get same brand levothyroxine at each prescription
Which brand
When was vitamin D last tested
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.
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
Far too often only TSH is tested and is completely inadequate
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 EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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)
Is this how you do your tests?
Very common as we get older for vitamins to reduce.
Poor conversion of Ft4 (levothyroxine) into Ft3 (active hormone)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Had brain surgery in 2014 (3rd Ventriculostomy) for Cavernoma on Brain Stem
Are you aware that a 3rd ventriculostomy may fail over time? Have you ever had further MRIs to check that it is still working? If not, it might be worth getting back in touch with the neurosurgical department that did your surgery to see if they will check your current situation, by giving you an MRI. It isn't clear from what you've written - did you get your tumour removed during surgery? Could it be growing back or getting bigger?
They initially thought I had suffered an anaphylactic attack but results of blood tests proved antibodies attacking my thyroid.
Some people with Hashi's find that they feel better if they can reduce their levels of antibodies. Various suggestions come up on how to do this :
1) Become 100% gluten free - this helps lots of people with thyroid disease, and they don't have to be allergic to gluten to benefit. They many not even be aware that gluten is causing a problem.
2) Selenium supplements help some people. There are various types of selenium supplement, some better than others. Search replies by SeasideSusie on the subject of selenium :
The standard dose of selenium is 200mcg per day, I believe. I couldn't tolerate it very well so only occasionally take a dose of 100mcg per day.
There are all sorts of nutrient deficiencies that are common in hypothyroidism. Fixing those will make you feel a lot better than you do now. Adding deficiency problems to your other health issues is not something you should allow to continue, since they can be fixed relatively easily in most people.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Confused and dazed
Can NHS test for the DIO2 gene?
Calling GP tomorrow
GP has reduced my Thyroxine dose.. Please advise…
Frustrated
