VLJones

[VLJones]

Had a thyroid problem for sometime it was overactive did not want surgery so opted for rad active iodine great at the begining but then told under active so now on medication levothyroxine but get no help with issues feel as though i'm a nuisance asking gp for answers

[shaws Administrator]

Being underactive is no fun at all. It is o.k. for medical professionals to knock out our gland either by removing (necessary if cancer) or RAI.

Patients seem not to be told of the consequences or reassured that with the right dose of hormones they should feel back to normal.

We then step onto a roundabout, i.e. to doctors - prescription etc etc and still not feeling well and being told we are 'normal'. Normal means we are within the range but doctors don't appear to know whether we should be at the top or bottom of range and that can make a huge difference.

First thing you must do is make an appointment to have a new blood test. Ask for a Full Thyroid Function Test (GP or lab may not do all of them);-

TSH, T4, T3, Free T3, Free T4 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

The test has to be the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards.

Get a print-out of your results with the ranges from the surgery. Ranges are most important as labs differ and it makes it easier to comment.

Any tests that aren't done you can have privately from one of our recommended labs. Pin-prick home tests.

Post them on a new question for comments.

[Marz]

Did you manage to follow the advice given above ? If you have your results with ranges then start a new post and members will support you with advice.

There is also a lot we can do for ourselves by reading and reading .... 😊

[VLJones]

I have a question to ask need a little advise just received letter from my Endo at my afternoon appointment i had bloods taken these are the results.

TSH *0.18 mU/L 0.30 - 6.00

Free T4 14.4 pmol/L 10.0-22.0

Sample received 15 Jan 2020 at 19.29

Before my appointment with i had a Synacthen test done is there anyone out there who can advise me if i post the results . Thank you

Val Jones

[Lora7again]

I have had one about 10 years ago and the results were normal. Do you have any more results for us to look at? B12, Iron and Ferritin, Vitamin D and Folate. All these need to be optimal for the Levothyroxine to work and I notice there is no T3 result, was it tested? How are you feeling now because I notice you had RAI 3 years ago.

[VLJones in reply to Lora7again]

Sorry the only test results are as given in post. Up until recently the meds i was on Levothyroxine 100mg and alternative days 75mg. I also take blood pressure tab Candestartan 8mg. The endo only tested thyroid .

[Lora7again in reply to VLJones]

That seems a low dose my Dad who is 78 is on 100mcg a day because he is classed as elderly. How are you feeling?

[VLJones in reply to Lora7again]

Lora7 i have good days and bad days. Very tired all the time can have 8hrs sleep and then have a nap in the afternoon. Put on to much weight been on diet donot seem to be able to shift it. Skin very dry and flacky using lots of creams to try to bring it back to normal. I need to try and get the Endo to test more next time have another appointment in April . But need to do some research before that appointment.

[pennyannie]

Hello Val :

Your most recent post is missing a T3 blood test result and is inconclusive :

We need a T3 and a T4 to see how well you are converting the T4 into T3 :

Please post any results you have, as there are some amazing people on here who will help you understand anything you are worrying about.

I am with Graves Disease diagnosed in 2003 and treated with RAI in 2005.

After this treatment I was discharged with a prescription for Levothyroxine and believed I was cured : not knowing then that Graves is an auto immune disease.

In primary care my bloods were tested twice yearly and I was only ever on monotherapy with Levothyroxine at either 100/125 mcg daily, always feeling better on the higher dose but told I couldn't stay there because of my TSH and therefore dropped back down to a lower dose.

Approximately 8 years after RAI I became increasingly unwell resulting in various appointments with ophthalmology, rheumatology, and gastroenterology all of which proved pointless but for a ' flagged ' low ferritin level , and I was referred to by my doctor as a conundrum.

I did request a short synacthen test as I recognised my adrenals were suffering having picked up the slack and the RAI : needless to say, it didn't say anything - and I'm sorry but I do not remember the numbers as I'd dismissed the tests functionality after reading that it was not a reliable test for anything other than Addison's Disease :

I did see an endocrinologist but I was refused a trial of T3 owing to the fact that by this time my TSH was suppressed.

So it was now 2018, and I started to self medicate giving myself a trial of T3 and I also purchased some Natural Desiccated Thyroid hormone replacement and stopped following the NHS advice and followed myself.

There is more on my profile and I've written many posts to other people on this website should you wish to look at my ' outpourings ' !!

There are two important books that helped me along the way, back to better health :

Your Thyroid and How To Keep It Healthy - written by a doctor who has hypothyroidism Barry Durrant-Peatfield. We may not now have this little gland, but it is a major gland and we need to know how to compensate accordingly.

Graves Disease - A Practical Guide - written by a lady who has the disease and went through RAI in the 1990's. Elaine Moore is a medical researcher and her book and her website are an excellent adjunct to this amazing website.

[VLJones in reply to pennyannie]

Hi pennyannie i do not have that result only what i have posted. Do not think it was tested. Do not know why.

[pennyannie in reply to VLJones]

I would hazard a guess it wasn't tested as the endocrinologist doesn't/isn't wanting to know the answer - as then it might, possibly will, show that you are not converting the Levothyroxine into T3 and s/he then needs to spend time and money to alleviate your health issues.

This may in turn put her/him under the spot light and against either/or, the guidelines he is instructed to work to and the local CCG authority who currently seem to have banned the prescribing of T3 to new patients and restricting said hormone to those already well and happy with this additional hormone replacement medication.

I'm sorry if this sounds cynical and negative but I was on the NHS merry-go-round for over 2 years and not one department offered me any help or advise on my health issues.

What are your symptoms and what medication are you taking ?

[pennyannie]

Good morning Val,

Just a thought. if you are wanting to get your own private blood tests actioned to include everything you need, for a comprehensive answer from people better able than myself, Medichecks is running a discount on the Thyroidcheck UltraVit :

If you check out their website, alongside others, as on the Thyroid uk website, you will see, that for an additional charge a nurse can visit you at home and take the bloods.

This would be the first step needed to be taken to help advise you further :

[VLJones in reply to pennyannie]

Good morning penny

Thank you for your help and advise its been a great help . I am going to read the books you suggested. I just feel that having some help with how to ask the specialist what blood tests should be done. I have recently retired from work so just adjusting to my new found freedom. Hopefully i will start to get my life back to normal.

How are you coping with your health ?

Its really great to be able to pick brains on this subject.

Thank you

Val.

[pennyannie in reply to VLJones]

I was attacked at 56, by a work colleague, and diagnosed 3 months later with Graves and had RAI the following year. I resigned from the work place and cashed in a small private pension to tide me over to 60.

I was well on Levothyroxine for about 5 years and then started going downhill and felt like I was living with continual flu' like symptoms, which I just 'put off ' thinking about too much and put it down to my age.

I asked my doctor to run the relevant tests as detailed on this website and in the books you wish to read. She refused so I had to go private and the rest is ' history ' .

You may find Elaine Moore's book heavy going - I did, but then I'm dyslexic.

She now has a very well respected and researched website that you can access immediately and there are many articles and research papers to understand, but I think a little bit more PC than her first book.

[VLJones in reply to pennyannie]

Hi penny sorry to hear your work college attacked you how dare he/her. I was just thinking how when you pay for a private blood test and the results come back how do you tackle telling your doctor and will they abide by the results?

I notice you have self medicated were do you buy the medication you need?

Thanks in advance

Val

[pennyannie in reply to VLJones]

The NHS abide by the guidelines in place and as such are not obliged to test anything other than a TSH.

If this is high/low in the range, you might get a T4 blood test but for T3 and vitamins and minerals, it all depends on your doctor.

Since you have already said that you feel your doctor thinks you are nuisance, you might be up against a brick wall.

The first option is to try another doctor.

If this fails you are left without NHS options and need to go private to get the tests actioned to know why you feel as you do.

Once with the tests you post them back on here with the ranges and people more able than myself will advise accordingly.

Your doctor is not obliged to take any notice of these private blood tests and if concerned may then run NHS ones to confirm or deny that there is a problem.

The NHS work to NHS guidelines and with regard to vitamins and minerals, we need ours to be optimal and not just anywhere in the NHS ranges so you may not qualify for NHS supplements and have to buy these yourself.

As you read up, starting here, you will start to realise and recognise you are not alone, and many of us on here, now self medicate as we have hit the same brick wall.

We are not allowed to openly discuss any purchase of thyroid hormone replacement, but you can be given ' private messages ' PMs in this regard.

It's a massive learning curve, and initially I was shocked as to why and how is this NHS treatment, but I 've fought my corner as far as I could, and wanted a feel well, so, ironically, got better staying away from the doctor.

P.S. NB:

Your ferritin needs to be up and over about 80 for Levothyroxine to work effectively. Mine after 3 years of complaining was found to be at 22, but I was in the NHS range and considered a little " low ' but good to go, until I confronted my doctor and then prescribed iron tablets which funnily enough made me worse and then was refused any alternatives.

So, I think that was when I realised I had to do things for myself and started supplementing other iron tablets and I whizzed down liver with a dollop of mayo every day for breakfast, s with no saliva, my mouth was so painful I couldn't eat things the conventional way, and only managing soft sloppy whizzed down anything.

PPS. I had been diagnosed by the doctor with low ferritin about 5 years earlier, so she knew I wasn't metabolising then and so prescribed me some iron tablets which were stopped after a month. Whether she thought to increase my dose of levothyroxine then or not I do not remember, but this time she reacted by putting me forward for a coloscopy and endoscopy, only to tell me, after the disastrous appointment, when I asked about what had happened, that the referral wasn't actually necessary. ????

I said I wouldn't be able to swallow the scope, but nobody listened, that was aborted and I collapsed in agony as when the colonoscopy happened the same pain was in my back passage as was in my mouth. I fainted and woke up with both arms attached to machines, but I was told that I was ok - as they didn't find anything. ?????

I believe I was suffering from the consequences of drinking RAI as it's a slow burn that goes through your whole body.

Many hundreds, if not thousands of people have no issues with this RAI treatment but I did, and the consequences of RAI are well documented. This is my assumption as I have received no help nor understanding from any NHS professional.

[pennyannie]

Hey there,

Sorry for my rant - it hit a nerve - I've had a shower and calmed down - apologies.