Frustrated after yet another 'normal' result.

[katacharin]

Hi everyone,

Sorry if this is more of a rant than anything specific.

Just got back from yet another Dr's appointment, and yet another set of blood test results coming back as 'normal'. This time I had finally been tested for FREE T3 & T4. It was a new doctor so I again spent time explaining how, in the past year, since being diagnosed hype & taking Levothyoxine, my symptoms have INCREASED, and new ones developed. All she could say is that I've had extensive blood tests done and everything is 'normal'. She suggested that the thing causing all my symptoms is stress and started quizzing me about my life. I can admit that I am a bit stressed, but not overly, and really the main cause of stress in my life is this! It's new symptoms appearing every week and my body feeling like it's not my own anymore. She has represcribed me laxatives, which it seems I am now reliant upon (no-one caring what the underlying cause of this continuing constiptation is - she suggested some people just have a 'constipated constitution'). So my hair falling out, constipation, bloating, hair loss, heart palpitations, infertility, coldness, tiredness and the rest of it are all just because I'm stressed. No, I am stressed BECAUSE I'm constipated, bloated,losing my hair, NOT pregnant, cold, tired, and depressed!

Sorry I still do not have a print out of my bloods. I asked the doctor last time and he was pretty sheepish about it saying it would take a lot of paper to print it out!! I feel quite frustrated when I'm in the doctors, and I know they only have a 10 minute slot (the doctor today blatantly looked at her watch as I was talking on!) and they all seem to think it's just in my mind anyway.

Anyway....I have found a Thyroid specialist in Birmingham called Dr John Watkinson, who runs the Birmingham Thyroid Clinic. My mother-in-law is one of the only ones who seems to be taking me seriously and has offered to pay for a private consultation with him. Has anyone else had any experience there?? I'm going to try and get an appointment.

I'm even starting to doubt myself now. What if it's not my thyroid at all? But if not that, then what? All of these symptoms have only developed since I've been on Levothyroxine; it can't be a co-incidence.

I feel really grateful that there is a group here where other people seem to understand and believe me.

[Fruitandnutcase]

Not surprised you want to have a rant. A 'constipated constitution' - honestly you couldn't make that up could you. As for being stressed, considering the number of people on here who have been told the same thing it is obvious that some doctors don't seen to realise how stressful having no one take you seriously can be. That in itself is mega depressing but you are not depressed in the way they mean. Then to look at her watch. So rude and makes you feel horrible.

Do your know what your levels are? If not ask your surgery fir a copy of them and put them on here, someone will come along and give you advice. Have you had B12, vitamin D, ferritin and folates done too?

Thank goodness for your lovely mother in law. She sounds a real treasure. Don't doubt yourself though, for years I felt that I had some sort of autoimmune problem, I had looked at most of them but not thyroid because I had bern told years ago my results were ok, then I felt particularly awful, went to a doctor in August to be told 'I needed a holiday' only to be diagnosed with Graves in November by which time I was really ill, so you know your body. Ask Louise for the list of good endo's and see if you can find one in your area. Just keep going

[katacharin in reply to Fruitandnutcase]

Thank you! It's good to get it off my chest and have other people confirm that I'm not going mad! x

[teenarocks]

Hi Katacharin--I am in US and your "rant" is so familiar. It happens all the time and I've heard it over and over including from myself. I suffered for 20 years before I found out keeping my TSH in line is only part of the solution. This past March I found a doctor who explained the "gut" connection to autoimmune disease. Six months ago on his advice I removed these things from my diet: gluten, soy, dairy, caffeine, alcohol. I also greatly reduced sugar. It was not an overnight magic cure-all but after hanging in there and giving my gut time to heal, I am now feeling so much better. And now I don't even miss those things. I can sit at a table and watch someone eat a piece of cake or pie and not even care. I think of it as if it were poison to my body----and it is! Here's a helpful website: thyroid.about.com/ I wish better health for you real soon.

[katacharin in reply to teenarocks]

Thank you x

[teenarocks in reply to katacharin]

Perhaps I should explain as it was told to me. The doctor said that hashimoto's autoimmune thyroiditis causes the immune system to attack the protein in the thyroid gland. The protein in gluten is almost the same chemical makeup as in the thyroid. So when you eat gluten, your immune system thinks it's thyroid protein and it sets up an attack. So if you are eating wheat all the time your immune system is in a constant state of attack. That's the simplified version but I think it explains it.

[katacharin in reply to teenarocks]

Thanks, I have read a lot about this, but at the moment I don't know if I have Hashimotos or not as my antibodies have never been tested. I have altered my diet significantly and rarely eat wheat, dairy or sugar now. (But I'm not 100% GF!)

[Clutter]

Katacharin, if all you want is your last thyroid bloods results it should be on one sheet. Ask the Practice Manager for a copy of the results. They may charge a nominal £1/£2 for printer ink and paper. Patients are entitled to see their test results under the Data Protection Act.

If you want your entire medical records, manual and electronic summary, this will cost £50.

ico.org.uk/for_the_public/t...

[katacharin in reply to Clutter]

Thank you that's really good to know. I might call the surgery and ask for this! x

[MacG]

Hi Katacharin,

I received an unequivocal diagnosis of Hashimoto's Jan. 2013. BUT for about 10 years prior to diagnosis, however, I had suffered all of the symptoms (some of which you include in your list) that I now understand to be a result of the Hashminoto's. Throughout this time my TFT tests were "normal".

Here's three things that might help:

1) Have they tested for Peroxidase Antibodies? I notice that someone above has mentioned autoimmune thyroid disorders with regard to gluten. This is the test you need to establish if it is autoimmune. My GP had only been testing FT4 and TSH which were "normal" (but see point 2) but it wasn't until she was really pushed that she tested for Peroxidase Antibodies. These will be elevated if you have the most common type of hypothyroidism, which is Hashimoto's disease. For me it was the results of the Peroxidase Antibodies test that gave an unequivocal diagnosis and finally triggered treatment.

2) "Normal" does not = optimal. My FT4 results, although in range, were low and over the course of blood tests taken over a few years steadily but consistently deteriorated to the point when it was 12pmol/L (very close the figure of 11 at the bottom of the reference range). This was still 5 years prior to diagnosis!!! With regard to this point I have since learned that in order to determine lab ranges a large sample of “healthy” people are tested and their values plotted on a graph. Unfortunately, many people are not formally diagnosed as hypothyroid so they too form part of the sample and their lab results become the lower part of the graph. It is common knowledge amongst the thyroid-patient community that to feel well you should aim to have test results in the optimum part of the lab reference ranges. This fact is also acknowledged by mainstream endocrinologists. In "Understanding Thyroid Disorders" Dr Anthony Toft writes “Your GP or thyroid specialist will usually prescribe a dose of thyroxine that raises the fT4 …to the UPPER part of the normal reference range and reduces TSH level in the blood to the LOWER part of the normal range” [my emphasis].

3) I don't want to send you up a blind alley and it does cost (£60 for the test and £60 for genetic counselling that you do have to have) but I very recently did the DIO2 genetic test and this too, for me, has filled in another important part of the jigsaw. I'm afraid I am a bit evangelical about the test at the moment, but please bear with me! The results show that I have inherited a "faulty" gene from not one but both parents which means that my ability to convert T4 to T3 at cellular level is significantly impaired. So, if you think about, if your TFTs although "normal" are already low in the range and you have problems with converting at cellular level, you will feel ill. There will be hardly any FT3 getting through. Have you had your FT3 tested? For reference, after diagnosis it took over 18 months and 4 increases of levothyroxine before mine finally crept into range. AND during this time my FT4 and TSH were looking better. It was because I kept asking myself why am I low in FT3 that I had the genetic test done. This genetic fault is not at all rare. It affects approx. 16% of the population. If you look at the left-hand side of the Thyroid UK Homepage where it says "About Testing" you will find details of this test. There is also a link to a research paper that clearly states that in those cases where the DIO2 issue is present the TFT serum results will be NORMAL.

Some food for thought and perhaps a few things to take forward.

Don't give up - keep looking!

I do hope you get sorted out.

[katacharin in reply to MacG]

Thanks so much for all that detail. I think I do want to get tested for the antibodies, and will ask about this when I see the specialist. I just had FT3 & FT4 tested, and I could see from the doctors computer screen that the FT3 was at the lower end of the range, I would rather be nearer to the middle or the upper range!

I won't give up just yet, although I'm sure we all have days when we feel like it.

Thanks again! x

[greygoose]

If a doctor looked at his/her Watch while I was talking, I would say something like 'Am I keeping you?', dripping with sarcasm! lol

I do hate it when they say things like 'oh, it must be normal for you', like she said about your constipation. Ever since I was a child I have had breathing difficulties, always out of breath. People are always asking me if I've been running when I've been sitting in a chair for half an hour! So, instead of looking for a reason for this, doctors just say to me 'oh, it must be usual for you'! No! It isn't normal for anyone!! So infuriating!!!

I'm so sorry you had such a bad visit. I know what it's like. You go home and kick the dustbin - or the husband, if he's around. The problem is they are so ignorant. But rather than admit that they don't know, they say the first stupid thing that comes into their heads, like 'it's stress'. Personnally, I get 'it's all in your head, go see a psy'! And they think we're as ingorant as them so we'll just take their word for it - after all, they are God! But we're not, are we! lol

You've had some good advice above, and I've got nothing to add to it, just good luck for the future, and keep us posted!

Hugs, Grey

[katacharin]

Thanks everyone for all your advice, and more importantly, support! It's good to know I'm not going mad!

I will be making an appointment with a thyroid specialist as soon as I can, and I just hope I don't get the same answers from them. I am also going to my GP surgery later today to ask for copies of my blood test results. Hopefully that will be straightforward (?!). I will post them in here if I do get my hand on them.

Thanks again everyone.

Naomi