Get natural desiccated thyroid

[Jackpot1-]

Hi I’m new here I’m in the UK been on thyroxine for 20 plus years. I’m nearly 50. Never felt right. Now heartbeat is faster than ever, convinced it’s the levo. Saw doc today, he can’t precribe NDT on nhs or just the prescription for me to get elsewhere. Am considering going to see a private Endo in London, but don’t think I can afford it. Anyone have any ideas and also if I did obtain NDT online how would I be monitored. So fed up fighting this condition, think it’s gonna end up causing me some serious damage

[matahari]

Hi, jackpot1--

I, too, have been fighting this never-ending fight with my thyroid for over 20 years. I have found this site and it helps just having someone respond to your post if no more than just moral support. I can sympathize with you as being sick is costly and seeing doctor-after-doctor gets really old. I was just told today to stop taking my thyroxine because my levels are too high! I only started it 2 months ago! Now I have to go back to the T4 only and I am scheduled to get my adrenal levels checked next Tuesday for adrenal fatigue. My Endo's office is calling me in some cortisol. I hope this does the trick because I am tired of this merry-go-round. I was just told last night by another person on this site that the adrenals and hormone levels could be my problem. It is something for you to consider. Post your TSH, T4, T3 lab results and one of the administrators will be able to help steer you in the right direction. I hope this helps. Stay well.

[cazlooks]

Dr <name removed by admin> at Gatwick Park Spire is cheaper (I think it was £150), he will also send you for NHS blood tests which keep the price down; just ask for NDT he'll give you it if your bloods suggest that's what you need. Unfortunately, by law he has to ask you back for follow up's but because he gets the bloods done by the NHS the week before your follow up you only pay the £100 for the follow-up fee. With a private prescription you can buy them from Alium pharmacy, which I think is the cheapest. Once you know your dose you can go freelance and get them yourself. PM me if you want the url for freelance purchases.

[Jackpot1- in reply to cazlooks]

Thankyou for your reply but I am in Norwich and it would be nearly a 3 hour drive for me, ideally I would like to try and get the train somewhere.

[RedApple Administrator in reply to cazlooks]

cazlooks , I have removed the doctor's name to comply with this forum's posting guideline, please only give this information via PM:

26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only. healthunlocked.com/thyroidu...

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer 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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 at the same time, plus vitamins

Private tests are available. Thousands on here forced to do so as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

[Jackpot1- in reply to SlowDragon]

Hi Thankyou for your reply. My latest bloods were done 9th January as follows...TSH 0.03...FT4 18....FT3 4.2...Vit D 78....Ferritin was low 19 he gave me some iron to take but caused constipation so I’m taking Floradix instead...HbA1c 34....FSH 2.4....B12 418 & Serum Folate 7.8....Don’t think he done Thyroid Antibodies....Don’t really understand if these results are ok ?? Can you shed some light please

[SlowDragon Administrator in reply to Jackpot1-]

B12 and folate are both on low side. You may benefit from supplementing daily a good vitamin B complex one with folate in

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin, yes iron supplements are notorious for causing constipation or upsetting gut

Eating liver once a week should help improve levels

How low was ferritin? If extremely low an iron infusion is better option

Vitamin D is often more effective at slightly higher level of around 100nmol. Better You vitamin D mouth spray is good option as avoids poor gut function. Perhaps try 1000iu spray daily.

Retesting twice yearly via vitamindtest.org.uk £28 postal kit

Getting vitamin D from sunshine in summer too

Selenium supplements can help improve conversion too

Only start one supplement at a time and wait for 2-3 weeks to see reaction if any, before adding or changing something else

Your FT3 is on the low side, despite very low TSH and high FT4. This suggests you are poor converter

First step is to establish if you have Hashimoto's (autoimmune thyroid disease) by getting TPO and TG antibodies tested. Important to test, before considering adding T3 or NDT

If you do then likely gluten free diet may help improve conversion too

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 print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also ask for list of recommended thyroid specialists, some are T3 or NDT friendly

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[Jackpot1- in reply to SlowDragon]

Many thanks for your long response, if I’m honest it is all so confusing but yes I have been taking Biotin 10,000 mcg once a day as my hair is so fine. Also I will tell you the other things I take, I came off the combined pill after continuous use for 24 years so I take A Vogel menoforce, menopause support and soya isoflavones for dreadful flushes and night sweats. I take solar b complex 50 twice a day, solgar zinc citrate 30mg one a day, floradix iron and Vit twice a day as my ferritin was 19 ug/L , selenium once a day, omega 3 fish oil, echinacea drops, passiflora and Devils claw drops My thyroxine 125mg daily. Should I stop any others before my bloods 3-5 days prior as well as the biotin? I have got more iron and thyroid bloods booked in for April 5th and I am going to say I want the Tpo and Tg antibodies tested as well. Sorry to throw all that at you I just feel so frustrated as I’m nearly 50 trying to deal with menopause symptoms, thin hair, extremely quick heart rate and this thyroid problem for 20 plus years You seem to know and understand an awful lot about thyroid, are you in the medical profession?

[SlowDragon Administrator in reply to Jackpot1-]

No not medic. Just a Hashimoto's patient, twenty plus years extremely unwell. See my profile. Would not of made any progress without fantastic help from this forum. Gut is often the ongoing source of problems, but a GP very unlikely aware at all

There's masses more to a thyroid issue than just getting the dose correct. Low vitamins, gut infections or gluten intolerance. Poor conversion is common problem

Soya is usually best avoided as upsets thyroid

thyroidpharmacist.com/artic...

Also iodine is very controversial

Usually recommended to absolutely avoid any supplements with iodine in, especially if you have Hashimoto's.

Multivitamins are generally not good idea. Too little of what we do need and stuff we don't need as well

thyroidpharmacist.com/artic...

drknews.com/iodine-and-hash...

[helvella Administrator in reply to Jackpot1-]

You should assume that no-one here is medically qualified. Of course, we will have a number of people with some such qualification, but there is in general no way of verifying such claims. Therefore, always assume that you are interacting with ordinary, unqualified people - mostly patients.

[NatChap]

I buy my NDT online and my endocrinologist is happy for me to do that and still be monitored by my GP. Of course GP's don't really understand how to monitor patients on NDT so posting test results on here for advice is essential! All the usual advice still applies...vit b12, vit D, ferritin and folate need to be optimal in order for NDT to be as effective as possible.

[silverfox7]

A point to note-when posting any results could you please include the ranges as they often vary from lab to lab. Sometimes it is possible to 'guess' from the figures but not always. For example the top of the FT3 range seems mostly to be 6.8 but mine is 5.9 so very different.

It does look as well that you may be a poor converter and that can be ghelped by getting Vit D,B12, folate and ferritin optimal, not just in range. It takes a while to do, I reversed mine in 5 months but the time is dependent on how low your reading are. But it was well worth the effort. You may find going over to NDT before this is addressed that you may not be able to successfully do that. It does make problems for some and/or adding T3.

[LAHs]

As Silverfox says give us the ranges of your results. My FT3 is 3.6 pg/mL with a range of

(2.3 - 4.2)pg/mL. I am on NDT and I am normal, i.e. I feel great. You have been given great detailed advice above and I would like to just add two important points:

If you switch to NDT you will be adding even more T3 than what you are producing yourself at the moment - which is high, higher than what I get from my NDT. Your heartbeat will almost certainly increase if you raise your T3, well at least that is my experience so start low and go slow with your NDT.

The other point is, travel to the ends of the earth to get the right medication. That's a bit of an exaggeration but I too drive 3 hours to my doc to renew my 'script (and 3 hours back!) and I do not have the luxury of a train. I listen to books on CD in the car, you could read a book on the train. A long journey 1 or 2 times a year beats perhaps the rest of your life arguing the right blood tests and prescriptions with an uninformed and uninterested medic.

[SlowDragon Administrator]

Presumably you have had new blood test results now

Did you remember to stop all supplements with biotin in

Have you had your antibodies tested yet and established if you have Hashimoto's?