How do I get diagnosed??????

[milltech59]

Hi there,

I am new to this site but am searching for answers!

In Jan 2012 I had a partial thyroidectomy as during a parathyroidectomy my right side of my thyroid was found to be covered in nodules and rendered useless, Since this op my symptoms have gradually got worse to the point I am now desperate ofr answers, I have all the classic symptoms of hypothyroidism and was not prescribed any medication following my partial thyroidectomy. I have had five visits to my endo who has still not precribed medication due to the gold standrd TSH being within "normal" range 2.55 (0.27-4.20). At my insistance in Jan I was tested for FT4 and FT3 and TPo antibodies

TSH 2.55 (0.27-4.20)

FT415.7 (12.0-22.0) 37% of range

At this point the lab deemed it not necessary to carry out the FT3 test!! I personally visited the lab to ask why this was not carried out and was told that the lab manager thought it was not necessary!! After a "discussion" they agreed that the FT3 was requested by my endo and carried out another blood test for FT3

FT3 4.5 (3.9-6.7) 21% of range. Not carried out at same time as FT4 but week later.

TPo Antibodies 56 (<100)

Why will they not prescribe medication based on my Ft4 and FT3 results as the endo agreed that they were far from optimal. I am due to see him next week and he said he may give me "the benefit of the doubt"!!!

I am finding this whole process so frustrating and finding day today life a real struggle as I have ALL hypo sysmtoms - my fatigue and muscle/joint pain are getting worse. I don't know how much longer I can carry out my job as my life just revolves round work and sleep!! My relationship with my partner is suffering due to lack of interest (and energy) in anything.

My question is if by a miracle next week he agrees to presribe Thyroxine (T4) medication, is

this the right medication for me as my FT3 is lower in the range than my FT4.

I have read that the good old NHS does not/cannot prescribe a combination of T4 and T3 medication, is this right?

Sorry for the length of this post but I am so glad I have found a forum where people are suffering like me and understand,

Any feedback would be greatly appreciated - thanks for reading.

[Hidden]

Hi milltech59 - I was going to point you to the main TUK site here 'getting a diagnosis' which may help....

thyroiduk.org.uk/tuk/diagno...

however you already seem to have done a lot of research and realise that treatment is not often started when TSH is below 10 (although some doctors do give a trial of T4 if above range with symptoms) here's a BMJ article (2008) about a trial over 5.

thyroiduk.healthunlocked.co...

Yes it is usual to start on Levothyroxine (T4) but some do prescribe T3 (more often if a Total T).

I admire you for going to the lab yourself and getting FT3 too. I presume you have had calcium tests re. the parathyroid op.

When you have a Thyroid function test make sure it is first thing as TSH levels tend to be highest in the early hours (I fast but some don't think this necessary). I also have had a PT op with no treatment, despite obvious symptoms.

One thing that did help me was to get my Vitamin D tested and sorted, other vitamin and minerals are likely to be low too and need addressing - irons/ferritin, folate and B12.

I just wanted to reply - I hope others, more knowledgeable can chip in to help you. Best wishes Jane

[Jackie]

Hi It is so frustrating for you. First ,as Jane says the other tests are important, also Glucose ,diabetes is,autoimmune and hormonal and more or less the same symptoms to start with as hypo.,also Feritin/iron. For PTH, the only good blood test is testing PTH, Calcium and vit D together and must be AM. A lot of docs do not seem to know this ( my good endo). If all high or the D high for you and the others high then nuclear scans,.Have you had your thyroid scanned ( ultra a sound) recently?Tests you can pay for and do yourself, reasonable price through the thyroid site. Lastly you need to research a good endo who will treat you regardless of blood tests but having them to see what is happening. All my best consultants say that it is more important how you feel ,not just blood results. I am treated for very low Free T3 and low T4 and have unmeasurable TSH. Incidentally I also have end stage cardiac failure etc etc, so the argument about low TSH being so dangerous is not accepted by me. or my endo. I have had treatment a long time.Maybe you could persuade your existing endo to try a little treatment ?As a trial.Otherwise look elsewhere.

I hope this helps.

Best wishes,

Jackie

You may not know but if you want to reply to a certain person, so we know, click on "reply to this" underneath their post.,

Jackie

[milltech59 in reply to Jackie]

Hi Jackie

Thanks for your reply.

I will provide you with a bit more information. I have been diagnosed with low Vit D and am currently on supplements, this has not made any difference to my symptoms. I have recently had a thyrod ultra sound which showed nodules on the remaining half of my thyroid and is slightly enlarged. I have also had an ACTH stimulation test and although I don't know the results I was told that they were within normal range. I have also has a complete auto immune screening which came back negative.

My sister has Hashimoto's which I have told my endo who made no comment. My Ferritin leves are low but within range.

Are there any other tests I should be requesting? As I mentioned I have had half my thyriod removed and cannot understand why I haven't been prescrbed medication! Unfortunately I never had any thyriod tests carried out prior to my parathyroidectomy/partial thyroidectomy so I don't know what is normal for me. I have had several blood tests tocheck my calcium

Levels and they are just within normal range.

Any suggestions of where to go from here would be greatly appreciated.

By the way my endo appointment scheduled for next week has been cancelled and re-scheduled for 3 weeks time - no explanation given.

Good old NHS.

As a seperate issue, last time time on went to Endo clinic (visit number four, was the first time I actually saw the consultant not a registrar (have never seen the same person twice). Anyway after waiting for an hour and a half I saw the consultant for just five minutes. Due to the frustration of the lack of time allocate to me I enquired about a private consultation with the same consultant not necessarily for treatment but just for him to listen to me, I was told that if I paid for a private appt I would be taken off the NHS list and any treatment or prescriptions would be on a private basis from that point forward!! Needlesss to say I thought twice as thyroid medication can be for life!!

Once again apologies for the length of this post.

Your comments would be gratefully received.

Milltech59

[Jackie in reply to milltech59]

Hi Again, I have just sent you a long reply, but may not have clicked, too early for my brain! If you have not received it, go back to the original question.

Jackie

[Jackie]

Hi First of all the thyroid needs to be treated just the same after surgery ,as if it had not happened, they always leave some. I have Hashimotos, it sounds just like it.Blood test do not always show what is happening in the cells and give false results. You definitely need a glucose test, I am very thin etc and have it. It has more or less the same symptoms of Thyroid disease, to start with. Also B12 and Folic acid. Booth are autoimmune!The best test for B12 is the FBC but usually they only do the specific test, needs to be quite high in range.You should be seeing a very good endo, find one yourself, do not rely on the GP, then ask for a referral again.. Vit D is complicated, hormonal and best under an endo too. You need enough treatment to put it in normal range, but it is only increased after 3 monthly test and more importantally , to include a corrected calcium test, this must always be in range and sometmes, cancer too may make it higher than normal, if your body has not recovered etc. The D should always be on a script, no other consultant, except an endo, is allowed to prescribe D as so complicated.I think you definitely need T3 on your blood results, this lowers your TSH, helps symptoms and especially weight, if a problem. I need mine at the very top of the range, although TSH extremely low.It sounds as if you also need a PTH test ( (parathyroid)First a blood test AM for PTH, calcium and vit DIf all high, or 2 high and D high for you. Then you need a nuclear scan of the PTH.

Regarding private consultants, rubbish. I always see private consultants,more time,also you can go before an appointment is due, and you see who you choose always. I am chronically ill so my medical insurance will not pay for any of it. I pay for my consultants, which is very cheap, endo charges, £150 first visit and then £90.they write and tell the GP what tests to do.They never dare refuse, even my difficult GP. If you see a private doctor, this is not the case, it is entirely different, unless you have a GP in a million. My practice hates private medicine!Any way with your problems you do need to see an endo who then looks at the surrounding issues, if good.If you did not have a copy of the consultants last letter and blood tests, phone the secretary and ask for them. Important.

I hope that helps. If i cn do more PM me, lick on my name.

best wishes,

Jackie

Your life ,your body, even if you have to fight for the help you need.