I am new, my GP appointment today did not go well and I have been refused an increase in medication for thyroid. I take 100mcg levo diagnosed 2011 what should be my next plan of action thank you
SERUM TSH *5.8 MIU/L (0.27 - 4.20)
SERUM FREE T4 13.1 PMOL/L (12.0 - 22.0)
SERUM FREE T3 3.2 PMOL/L (3.10 - 6.80)
The experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones and vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).
If you have the results of your recent blood work for vitamin and mineral levels like iron, ferritin, folate, vitamins B12 and D, plus the FBC, please post them, along with their reference ranges, as it will help members to comment.
If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your levo. etc. and that might allow members to make helpful observations or suggestions.
More in the next comment.
Did your GP explain why an increase in your dosage was refused? Is there a cardiac condition or something else that explains the reluctance?
SERUM TSH *5.8 MIU/L (0.27 - 4.20) Above the reference range
SERUM FREE T4 13.1 PMOL/L (12.0 - 22.0) Scarcely above the bottom of the reference range
SERUM FREE T3 3.2 PMOL/L (3.10 - 6.80) Scarcely above the bottom of the reference range
You know this already but your results strongly indicate that you're undermedicated.
An appropriately-medicated hypo patient tends to find that the TSH is suppressed to <1 as that is typical for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
Was the appointment for your blood draw as early in the morning as practical? Did you fast overnight (water allowed) and make sure you'd not taken Levo for 24 hours? This gives a good chance of catching the highest reading of TSH in your day which can be useful when assessing the need for an increase or to avoid a reduction in dose. Seaside Susie describes this as a patient to patient tip which we don't discuss with doctors or phlebotomists.
Clutter and SeasideSusie both have quotations that support the interpretation of your results as undermedicated.
Is there another GP that you can talk to about your results and in whom you can have some confidence?
ETA: You can read the extracts about treatment options here if you scroll down to see Clutter and Seaside Susie's comments: healthunlocked.com/thyroidu...
My experience is similar. Some GPs seem obsessed with the idea that raising thyroxine meds will cause us to keel over with heart failure even though I have not been able to locate any evidence that proves this. But what to say in the face of an adamant refusal ? The Pulse article would go down like a lead balloon at my Surgery and only one practice available to me in my rural area.
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
Some are NHS, most are private
Hi thanks the explanation was the GP was worried I would lose weight on a higher dose. Blood draw was done before 9am fasting and I left a gap of 24 hours between draw and dose.
I don't know if there are any other GPs I can speak to
To find a doctor who really knows about hypothyroidism or how to treat us is like looking for a needle in a haystack, I am afraid.
Thousands or patients take to levothyroxine like a duck to water and appear to lead a symptom-free life, but most on this forum do not or have difficulties in getting diagnosed or being prescribed and it also appears that most doctors haven't a clue except to look at a TSH and T4 result. They have no knowledge about clinical symptoms which can be disabling.
Weight gain is the commonest question on the forum and many are quite overweight because they're usually on too low a dose to raise their metabolism, so I don't know why your doctor would be worried about weight loss.
I'd be more concerned about your ability to achieve and maintain an appropriate weight when your vitamin and mineral levels are nowhere near where you need them to be but you've had some fine advice from Seaside Susie and Clutter on your other thread.
Plus, it would be more straightforward for your health to normalise if you were receiving appropriate thyroid supplementation.
Welcome to the forum, Jerma.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP. If your GP still refuses to increase dose see other GPs at the practice or change practice.
Do you also have high thyroid antibodies? Have these been tested? If high this is Hashimoto's
thyroiduk.org.uk/tuk/about_...
Highly likely to have low vitamin levels as you are under medicated.
Have you got recent test results for vitamin D, Folate, ferritin and B12
Post results and ranges if you have them
Is there another GP you can see ?
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Also this list of symptoms, print out and tick all that apply
thyroiduk.org.uk/tuk/about_...
If you can not get GP to increase
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
THYROID PEROXIDASE ANTIBODIES *375 IU/ML(<34)
THYROGLOBULIN ANTIBODIES *710.5 IU/ML (<115)
Jerma,
Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
What do I do about vitamin and mineral levels. They are low and don't know what to do about them thanks
If you post them, along with their reference ranges, there are several knowledgeable members who will be able to make helpful suggestions and alert you to whether the levels are those that should trigger NHS intervention and even what those interventions should look like (dosages etc.).
Ok will post them now thanks
Gluten intolerance or coeliac disease both cause weight loss, malabsorption and dire vitamins.
Your GP should have escalated this to gastroenterologist long ago.
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
When poor absorption is happening it can also be difficult to absorb your Levothyroxine.
Taking vitamin C with Levo may be an option to try
ncbi.nlm.nih.gov/pubmed/246...
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
In your case full testing for coeliac is probably necessary, but even if endoscopy is negative, changing to strictly gluten free diet is likely to help reduce symptoms, help gut heal and slowly lower TPO antibodies
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
Low stomach acid can be an issue
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
thyroidpharmacist.com/artic...
drmyhill.co.uk/wiki/hypochl...
scdlifestyle.com/2012/03/3-...
healthunlocked.com/thyroidu...
Other things to help heal gut lining
Bone broth
thyroidpharmacist.com/artic...
Probiotics
carolinasthyroidinstitute.c...
Importance of magnesium
hypothyroidmom.com/two-vita...
Many thin Hashimoto's patients struggle to get correct treatment
GP's seem unable to look at the whole picture.
This forum is run by Thyroid uk so have a look at their web site. Loads of good information. Print off anything that will help your cause and show it to your doctor and tell him it's off the site of Thyroid Uk who are in NHS Choices for thyroid disfunction. That should make him take note!
GP appointment - mixed result
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GP appointment wasn't helpful!
GP appointment
GP appointment
