Please any comments as confused
subclinical hypothyroidism classed as Myoedema... - Thyroid UK
subclinical hypothyroidism classed as Myoedema for medical exemption?
Written by
Stace268
To view profiles and participate in discussions please or .
50 Replies
•
SlowDragonAdministrator
Welcome to the forum
Are you diagnosed as hypothyroid and prescribed levothyroxine
If yes, you should get prescription exemption
SlowDragonAdministrator
How long since you started on levothyroxine
How much 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 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Have you had thyroid antibodies and vitamins tested
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
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 down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Always had normal TPO, T4 low and out of range sometimes, TSH borderline high 5.9 highest, now raised cortisol and T3 4.9 highest 3.1 lowest tested though could of been way lower at times when not tested, all vits OK except D3 28 now at 68 with vit d iu800, left on 25mg for 2 years. Parathormone now 18 was lower
High Parathyroid hormone result you mean?
High PTH is nothing to do with thyroid
Parathyroid glands just happen to sit inside thyroid
You need Vitamin D, calcium and PTH levels tested TOGETHER
Do you have results from testing all three together?
No just parathormone and bone profile vit D
You need BOTH TPO and TG thyroid antibodies tested
Need to test privately as NHS only test TG antibodies if TPO antibodies are high
Please add folate, ferritin and B12 results and ranges
You mean you have been left on only 25mcg levothyroxine for Two years?!?
TPO been tested several times its negative, my thyroid is genetic, ferritin and B12 in top quarter, vit D now getting higher due to supplements
Yes they left me on 25mg for 2 years
yes , hypothyroidism is termed Mxoedema on the NHS exemption form , that's the one you need to tick if you have been prescribed Levothyroxine . 'Sub clinical' makes no difference , if you've been prescribed Levo by NHS GP, you qualify for free prescriptions.
Thank You
Where did you find this information?Yes diagnosed with sub clinical hypothyroidism in 2009
can't remember .. just know it . Myxoedema is the original medical term for what we now call hypothyroidism. The NHS still use it on this form.
Myxoedema actually means "swelling of the skin and underlying tissues giving a waxy consistency" .. which was one of the classic symptoms that were noticed in hypothyroid patients before the cause was understood to be low thyroid hormones.
So you have been on levothyroxine since 2009
Prescriptions should have been free since then
I've been diagnosed longer, I didn't want Levothyroxine at first as worried about side affects, boy do I wish I'd listened to that doctor back then now.
What are your current symptoms
Are you now starting on levothyroxine?
Which brand of levothyroxine
What dose
Essential to test vitamin D, folate, ferritin and B12. These are likely low if been not been treated for a long time
You need to know if cause of hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies
About 90% of primary hypothyroidism is autoimmune
Symptoms lots, tiredness no energy bad skin, irregular to non existing periods,aches pains, breathlessness, anxiety depression blurred vision lots of dizziness headaches brain fog problems concentrating weight gain puffy face high cholesterol mood changes nausea 😵
Always had normal TPO, T4 low and out of range sometimes, TSH borderline high 5.9 highest, now raised cortisol and T3 4.9 highest 3.1 lowest tested though could of been way lower at times when not tested, all vits OK except D3 28 now at 68 with vit d iu800, left on 25mg for 2 years. Parahormone now 18 was lower
Hi❤️When you say paranormone do you mean parathyroid hormone?
If your parathyroid hormone is 18 that sounds out of range ( range 1.60..6.90 PTH) although it can vary from lab to lab) but that sounds high, as your calcium been checked along side PTH and vit D? Their is a condition called hyperparathiyroidism (nothing to do with the thyroid though) this is an over range parathyroid hormone, over range calcium, low vit D, that's the classic presentation 👍
helvellaAdministratorThyroid UK
Do not tick the box on your prescription until you have actually received your exemption certificate.
Refunds of prescription charges
If you need to pay prescription charges before your medical exemption certificate arrives, you can get a refund as long as:
• you ask for an FP57 refund receipt when you pay (you can’t get one later)
• the start date of your medical exemption certificate is the same or earlier than the date you pay for your prescription (certificates are backdated one month from the date that we receive your application - they can’t be backdated any further)
You must claim your refund within three months of paying.
The FP57 refund receipt tells you what to do.
If you are not entitled to exemption, you should consider the value of a prepayment certificate.
Details of exemption categories, charges, etc. may vary.
Lots more information about all aspects here:
You need to ask GP reception for the exemption form to fill in with your basic details........hand back to reception who will get a GP to sign it before sending it off. Exemption card then arrives in the post a few weeks later.
Does it look at income or diagnosis
Follow the link in my earlier reply - pretty much everything you might want to know is there. Or on a page linked from there.
It is based on diagnosis alone.
Diagnosis. My rheumatologist told me I was hypothyroid many years ago and started me on levo. My GP was the one that signed myxoedema on my exemption form.
I was previously on a prepaid "season ticket" for my many prescriptions and the two only overlapped a couple of weeks, so I was lucky.
Now I am over 60 and recently diagnosed as hyperthyroid I do not pay for any prescriptions.
If you tick the box on the back of the prescription as medically exempt, after the GP signed, the paperwork should catch up.
You will be exempt from all prescription charges from then on, including for other illnesses.
What about the ones before if I hadn't been diagnosed though had raised TSH on all tests or been told
You cannot claim historically.
There is a brief period of a month, before getting your exemption certificate, during which you can claim refunds but ONLY if you ask for an FP57 refund receipt when you pay. Once you have not asked for that receipt, you cannot claim.
SlowDragonAdministrator
Standard starter dose of levothyroxine is 50mcg
Blood is retested 6-8 weeks after each dose increase
Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is around or under one
Typically, unless extremely petite, most people will be on at least 100mcg levothyroxine per day
Eventual Dose of levothyroxine is estimated by your weight
Approx how much do you weigh in kilo
As a rough guide….likely 1.6mcg per kilo per day
Having been left under medicated very long time, likely to need to increase SLOWLY …..increasing by 12.5mcg daily….up to 37.5mcg daily. Waiting 6-8 weeks before increasing to 50mcg …….retest bloods 6-8 weeks after that
I'm 15st so how much should that be? I'm on 100mg levo I think they started me on 25mg as untreated hypothyroidism I think they think I have heart disease and I get anxiety
What are your most recent thyroid results
TSH
Ft4
FT3
Likely under medicated
ALWAYS test thyroid levels early morning, and last dose levothyroxine 24 hours before test
15st = 95kg
95kg x 1.6mcg = 152mcg as the likely dose levothyroxine required
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.
My T4 is 18 so I guess they worried about arrhythmia
Was test done early morning and last dose levothyroxine 24 hours before test
Essential to test Ft4 and Ft3 together
What are your most recent folate, ferritin and B12
I stopped taking Vitamins and thyroxine 48hours before test done at 9am, the GP will only test TSH not T4 and never T3 now, folate 15.4 and B12 top quarter not sure about ferritin
Last dose levothyroxine should be 24 hours before test
Strongly recommend getting FULL thyroid and vitamin testing done via Medichecks
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Think it was 24 hours I'm getting confused with vitamins.
I'm waiting for Dio2 test as done the others already
Hi Stace268,
I realise helvella has already provided this link for you but thought I would post it again as there is a lot of information in your post thread.
nhsbsa.nhs.uk/exemption-cer...
It clearly states exemption for myxoedema hypothyroidism.
Best wishes.
Hi Stace268,If you go to your doctor's surgery they will have the form that you need to fill in and explain about free prescriptions. It has to be signed by a doctor.
You said your thyroid problem is genetic, may I ask in what way? If you also have problems with your parathyroid, you really need your calcium levels checked and ask your doctor for the tests to rule out hypo or hyper parathyroidism. Either make you feel really poorly and are both serious conditions.
Good luck
I have Thyroid problems in family from both sides, anemia as a child, TPO is always negative and sometimes doesn't show anything they not sure why, also selenium was zero.Image is of Parathormone (parathyroid) after being on 800iu of vit D for 2 months, previously vit D 28 and now 68.
Parathormone
Significant minority of Hashimoto’s patients only have high TG antibodies
NHS refuses to test TG antibodies unless TPO antibodies are high
So you may just have high TG antibodies ….would have to test privately to find out
Medichecks or Blue horizon
Alternatively if both antibodies are negative
An ultrasound scan of thyroid needed
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
That's interesting to know thank you. TPO zero or non existent though. What would I have if not hashmiotos or graves?
Many autoimmune hypothyroid patients have low or non existent TPO antibodies
Either they only have high TG antibodies….or both antibodies are negative
Have you had ultrasound scan of thyroid
There’s two types of autoimmune thyroid disease
Hashimoto’s….where goitre develops
Ord’s thyroiditis - where thyroid shrinks and shrivels up
Ord’s is very common in N Europe
Both varieties are generally called Hashimoto’s
In U.K. generally Medics only call it hypothyroidism and not concerned with cause
The fact close family members are hypothyroid strongly suggests it’s autoimmune ….Ord’s or Hashimoto’s
OK thanks for informing me. I had anemia as a child and so did my son, he also has a raised TSH and his only 8. So do I refer to it as Hashimotos or Ords?
In uk call it autoimmune thyroid disease
Anaemia is common when hypothyroid
Has your son had full thyroid and vitamin testing
No Endocrinologist is sitting on fence, wasn't even interested in his symptoms most likely because he has autism and learning difficulties easier to brush it off as that
Autism and hypothyroid
autismparentingmagazine.com...
autismparentingmagazine.com...
Blue horizon will test children
Would need to pay extra for private blood draw
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Thanks, I'm aware of these private tests as was looking down same route for myself though worried about medicating privately as can't afford it and my son had seizures as a baby and toddler so wouldn't and cant do it without regular supervision
I wasn’t suggesting self treatment…but getting full thyroid and vitamin testing can show the extent of problems
Then you can arrange to see a thyroid specialist
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Thank you I think I already have this list for myself, do they see children too and I could manage to pay for initial tests but I couldnt afford to pay for lifetime thyroid treatment for either of us
Blue horizon will test children You would need to pay extra for private blood draw
Always test thyroid levels early morning, ideally just before 9am
Only do private testing early Monday or Tuesday morning
Be aware of possible postal strikes
For your son
Depends what results shown
If vitamins are deficient then GP/endocrinologist should prescribe to improve
If TSH over 5 and/or high thyroid antibodies this confirms autoimmune thyroid disease
GP/endocrinologist should start treatment
If vitamins are low, but not deficient….then likely down to you to work on improving low levels by supplements and diet
Low vitamin levels tend to lower TSH……making it harder to get prescribed levothyroxine
Many, many people get full testing done privately, and then go on to get full and correct treatment on NHS
Come back with new post once you get his results
For you
What vitamin supplements are you currently taking
Only test after 6-8 weeks on constant unchanging dose and brand of levothyroxine
Test early morning and last dose levothyroxine 24 hours before test
Stop taking any supplements that contain biotin a week before blood test
Come back with new post once you get results
OK and thank you for your help
Not what you're looking for?
You may also like...
Medication for subclinical hypothyroidism
results over the past couple of years, can you please advise what you would do and how you would...
Subclinical hypothyroidism
on a high dose if I end up with bad side effects. Any advice would be great.
is this subclinical hypothyroidism? 
Subclinical Hypothyroidism 
Subclinical hypothyroidism 
Subclinical Hypothyroid 
Medical exemption on prescriptions
