Feel like crying, again, new endo won't treat me after all.

[kazzyhoo]

I have managed to get some of the latest test results from my g.p, been asking the endo for these results for weeks and weeks and they still won't give them to me! Unfortunately the letter the endo wrote to my g.p does not have all the results of everything I was tested for, have no idea why?

In March I tested positive for TPO antibodies (364) TSH 2.4

October 4th TSH 4.5 TPO 248

repeated October 11th TSH 4.51

November 5th

TSH 2.84

fT4 14

fT3 3.9

Ultrasound scan in July showed nodules inside thyroid (get full report tomorrow)

Ultrasound scan in November says the hypervascular appearances are consistent with a thyroiditis, no parathyroid lesions, no discrete thyroid lesion is demonstarted, marked hyperaemia is demonstrated.

Vitamin D 71 July'11

Vitamin D 62.2 July '12

Still awaiting Vit D results for Nov

Calcium 2.10 July '11

Calcium 2.08 March '12

Calcium 2.16 Oct '12

The letter from the endo to my g.p says this.....

"This lady has been referred to my clinic for assessment of her thyroid. She has a long history of chronic tiredness and also reports weight fluctuations and feeling constantly cold. Although chronic fatigue syndrome is known in the patient, at least some of her symptoms could also be in agreement with some under-functioning of the thyroid.

According to previous blood tests her TSH levels are somewhat fluctuating but mainly above 4.0mU/L since many years. TPO antibodies are positive.

We have discussed that in the UK routine replacement with L-Thyroxine is currently not suggested below a TSH level of 10mU/L. However, the population mean of TSH of a well screened population is some ~ 1.5 to 2.0mU/L and some patients may well benefit from a small dose of L-Thyroxine replacement even when TSH remains below the mentioned limit.

Repeat blood tests from today are normal showing a TSH of 2.84mU/L, fT4 of 14pmol/L, and fT3 of 3.9pmol/L. Given these normal results treatment with L-Thyroxine can currently not be justified. However, should TSH remain constantly in the upper normal range (e.g. well above 4mU/L), it could be justified to try whether her symptoms improve with a very small dose of L-Thyroxine, and stop the treatment if there is no improvement.

I would be grateful if you could provide me with a copy of the report of the ultrasound scan. We will then see her back in my clinic in 7 weeks for discussion of the results."

The endo didn't even ask me about ANY of my symptoms during the appointment, otherwise he would of got the FULL very long list, I think he got that info just from the notes on the referral from my g.p!

So please can anyone tell me what on earth I do now? I had pinned all my hopes on starting treatment soon, it was the only thing keeping me going

I feel so utterly ill, can't function at all even though I have been declared fit for work by the amazing "medical professionals" at ATOS.....being able to text on a mobile phone, lift an empty cardboard box and sit in a chair unaided qualifies as being fit & healthy enough to do a full-time job!

I'm sure you all don't really need me to go into all the details of just how much pain, fatigue etc I'm in, how scary the palpitations are, and how I am unable to stay awake during the daytime despite being on amphetamines (prescribed for excessive daytime sleepiness!)......just how on earth do I convince my endo to start treating me, and what is the right treatment?

Thank you in advance for anyone who bothers to read all of this

Karen.

[kazzyhoo]

Oh I don't think I made it very clear....I saw the endo in November, all the other test results are from various other consultants i.e. immunology, dental hospital, g.p.

[Moggie]

I would be trying to convince my GP to start treating me not the endo. What sort of relationship do you have with your GP, is it a good one, does he/she listen to you - if not could you not see a different GP at the same surgery as you need to find a doc who will treat your symptoms and not your blood results. I know that sounds easy and you, like many others on this site, have found out how hard it actually is.

Have you had all your vits tested, expecially VitD and B12 as these two, if low, can mimic thyroid symptoms. Are you good at research on the net - if you are you may need to do a lot of this to convince your doc that you need thyroid treatment by taking printed evidence on your appointments (which is what I did). You could also suggest to your doc that he/she trial you on Levo with a promise from you to stop or contact the surgery if you feel hyper at all. Point out to your doc that you are sick and tired of feeling this way and being shunted from one specialist to another when this could be easily solved, in your opinion, by a trial of Levo

I really hope you find the answers you crave and with a lot of hard work and research (which I know from experience isn't easy when you are feeling so ill) you WILL get there in the end.

Good luck and keep asking questions and picking peoples brains on this site when you need to.

Moggie x

[kazzyhoo in reply to Moggie]

I spoke to my g.p yesterday, and although I have a very good relationship with him he said under no circumstances will they treat me at that surgery until my TSH goes over 10

I have been so ill for so many years, the last 5 years I have really gone down rapidly, I have been unable to work for many years and now I can barely survive a day, in so much pain all the time, on average I'm sleeping for 13 hours each day/night, and when I am 'awake' I can't function at all, I asked my g.p about the severe pain in my upper back/shoulders/neck/arms as it has recently become much much worse, he said it was inflammation of the trapezious which covers all my areas of pain, he said I'm not suitable for any inflammatory drugs so I should take paracetamol and get my kids to massage me with oil!!! .....I told him I had been trying to massage myself, being as I'm a fully qualified aromatherapist (incl various forms of massage therapy)...highly frustrating that I'm so limited in being able to treat myself, as you can imagine!

As far as I'm aware some vits were tested in Nov, but these are in the results that the endo is withholding from me! Last time my vit D was done in July (62.2) they said it was normal and within range....as everything always seems to be, it's as though they keep moving the boundries all the time and by the time they do start treating me the damage is never going to be reversed.

Thank you for your support, it does mean a lot, but it really is outrageous that we all have to go through this!

Karen x

[Moggie]

p.s. It was no bother at all to read your question - thats what this site is all about, helping and supporting one another. Hopefully many more will chip in with suggestions and ideas to help.

Moggie x

[shaws]

Maybe you could email [e-mail] and ask for a copy of the Pulse Article by Dr Toft the ex President of the BTA to give to your GP. This is what he states about antibodies in question 2.

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

[kazzyhoo in reply to shaws]

Thank you I will try doing this when I am a little more 'with it', having yet another very bad day :/

[editfmrt]

I've sent you a private message.

[NaamiSue]

The area you have your pain I strongly suspect you have a B12 deficiency.....I would insist that the GP tests for this and you see the results. It can be in range and still cause a LOT of problems.

I can not believe that they are happy to prescribe you amphetamines for your tiredness......leaves me speechless!!!!!!!

I really feel for you...this is a mess.....no wonder you are feeling so horrible!

[BexyLS]

I agree with Shaws Tofts understanding thyroid disorders is a good read and he suggests TSH in lower range and FT4 in higher part of range. I used his information to show my Doc that a TSH of 3.28 was not good enough as i still had symptoms of underactive thyroid. My dose was increased. Had to argue with my Gp tho but as soon as he realised i knew a bit about all this he agreed with me!

Would maybe taking a family member with you who could explain your symptoms from their point of view and how things have changed help?

[BexyLS]

Sorry i didnt explain the family member bit well. Brain fog! Maybe two against one would get the GP to listen more and give you more confidence while there too xx