Desperate

[suep1]

Desperate to see an endo in the North west that will consider treatment other than Levothyroxine My Mum will pay if it means private appointment, can anybody help me? Levo has been all i could get for 3 years. I have just about every side effect known for this med. I have stopped taking it but am now ill again with hypothyroid symptoms

[BadHare]

Hi Sue,

Have you thought of self-medicating with T3 or NDT?

I've been doing so since the summer of last year, after hitting a brick wall with my secondary hypothyroid symptoms. It's changed my life for the better. I've sent you the details.

Mel

[pixiefeet12345 in reply to BadHare]

Hi Mel i would like to try self medicating with T3 can you help please?

[Russellb73]

Hey sue I had a similar experience endo wouldn't diagnose me felt I was hitting brick wall

What tests have you had done ? Had you had t4 / t3 results ?

Acth, short Synacthen test results ?

What are your main conditions have you had any emergency symptoms or situations

I had to go through several stages before I pieced wverythjbg together and prepared a case file to show that AI Was the problem

I was finally diagnosed two weeks ago now and have the letter to prove I have AI cause from autoimmune disorders!

I had to push every step I know how hard it can be but don't give up

I wish you in your quest good luck

🙏🙏

[marigold22 in reply to Russellb73]

What is Al ? I'm seeing yet another endo soon (still waiting for the appointment date) to push for two antibody tests and hopefully the DIO2 gene test to see exactly what is going on.

[Russellb73 in reply to marigold22]

Hi sorry adreanal insufficency! Have you had a short Synacthen test done ? Also t3 test is hard to get because of costs of medication!

I have suffered with an under active thyroid now for around 4 years and only last week did I get the diagnosis!

My short Synacthen test results came back low whilst my base line is quite high even after the injection ITV could not increase the cortisol levels enough to get me functioning !

They then said they were happy to try a short spell on steroids face me predisullin and once that had finished i crashed again ! I then had another Synacthen test and the results were conclusive!

I had bloods done for autoimmune but still waiting results of these ! But because of b12 deficient abd hypothyroidism its apparently pretty evident its the hypothyroidism which has caused the rest to happen !!

I hope you get an answer soon I know the pain, exhaustion tiredness weakness is horrible but once given the 👍👍 I feel so much better and even had much improved sleep as I have also insomnia!! Which now due to correct doses of meds is working !

[Helen123-]

Its pretty much impossible to get T3 on the NHS anywhere in the UK . I took thyroxine x 3 yrs and it made not the slightest difference at all so I stopped taking it over a year ago and now take nothing . However this wouldn't be right for most people AT ALL so I'd guess go with your Thyroxine till you found an alternative . Your best bet would be to google a alternative practitioner for thyroid problems . Dr Barry Durrant Peatfield might be a starting point . And for a completely different take on the situation ? Google The mysteries of Thyroid / Goop.

All the best . Helen.

[whispers60]

the thyroid uk site has a list of doctors that are recommended, I think its a lady called louise you have to email.

[radd in reply to whispers60]

suep

Welcome to our forum and sorry to hear you are not feeling well.

You can email [e-mail] for a list of sympathetic endos/doctors that members have had positive experiences with.

Some are national health but most are private. Be prepared to travel.

[humanbean in reply to radd]

whispers60 radd

Since Louise got married her email address is now [e-mail]

If you ever forget the email address it is given on Louise's profile in the text section at the top :

healthunlocked.com/user/lou...

[radd in reply to humanbean]

Oh yes.

Thank you HB.

[Sandybeach1964]

My Endo prescribes NDT

[Hashihouseman]

Levothyroxine has a toxic effect on me for sure. I have trialled various doses and forms of the drug, including oral liquid and combinations with liothyronine t3 and kept detailed blood test and symptom records for over a year. I now rely on natural desiccated thyroid replacement from the USA. It works and there are no apparent side effects compared to the profound and disturbing ill effects I suffered on Levothyroxine. NDT has more t3 than human thyroid produces so it takes a while for allostatic response by the body to adjust and there are temporary excess T3 signs but these are nothing like the toxic sensations being on Levothyroxine. It is probably necessary to monitor free T3 and T4 and TSH while adapting to an NDT regime and working out an optimum dose for you. Getting NDT prescribed on the NHS is another matter but it's good enough for Hilary Clinton ! <Source deleted by Admin.>

[Geniler]

Go see the integrated doctor in NW London. He's good and will prescribe alternatives including NDT

[SlowDragon Administrator]

Most people on levo need low TSH around (or even slightly below) 1 to be adequately treated. Do you have your latest blood test results?

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at VERY GOOD (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells, including NDT or T3

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.(£99)

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too. Selenium supplements can help too,

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

[satu55555]

I really recommend going to a private (there are no public ones) functional doctor or functional nutritional therapist who is specialized in thyroid issues. Thyroid issues, especially hypothyroidism have often something else in the background that is causing the issue. For example just long term bad stress can cause it because when a stress hormone cortisol goes up the thyroid hormones go down. The stress can be caused by also for example stomach/intestinal issues. Functional practitioners don't only look at your diet, but they also advise a supplement regime and they can have you take some tests (and conventional doctors don't usually have access to these tests). I have worked with a functional nutritional therapist for my hypothyroidism and low cortisol for less than 3 months and I feel like totally a different person already. There's still a long way to go, but we found I have small intestinal bacterial overgrowth, which is causing a lot of my problems together with a lot of stress. It had also caused a deficiency of over 10 nutrients regardless of my very healthy diet. And I did not get any help from normal doctors at all.

[suep1]

Thank you all, I have to do this with a Endo, functional drs are out of my price range. I do have all my tests going back 3 years. I take many vitamin supplements and have all my "ducks in a row" I have learned and read so much about this terrible disease. Sandybeach please would you send me the name of the person in Warrington, Again thank you all for your help and support.

[Clutter in reply to suep1]

Suep1,

If you post your results with the ranges (figures in brackets after results) in a new question members will advise whether you are optimally medicated.

Sandybeach may not see your request. You can send Sandybeach a private message by clicking on his/her username above and click on Send Message top right of Profile page.

[Eddie83]

Self-medication might end up being your only option. PM me if you want info on internet sources of T3.

[SueHG]

Make an appointment with Dr Peatfield in Manchester, you can find his contact details online. If he suggests T3 then you would have to get it yourself. I get mine from Greece. I saw him a year ago and now am feeling very much better. Good luck.

[suep1]

Thank you all, i now have an endo appointment in January who has been kindly recommended to me, I have spoken to her secretary and am also down to fill any cancellations fingers crossed that this will bring a resolution to my medication problems, may you all have a great weekend.

[marvalrus]

Do you get you blood tested regularly? If so, do you include Cortisol once in a while with that?

[suep1]

My blood tests are only eVer TSH and T4. I did once manage to get a 9am blood cortisol test which came back at 444. The cortisol blood test is petty usless I believe and have sent off my own saliva test but only just.