Feel let down by GP

I'm on 200mg of Leveothyroxine per day. I was on 225 previously but the Endocrinologist dropped my dose in in February. I still don't feel any better I'm getting a lot of anxiety that makes me that frightened. Also my head feels like it's swaying and dizzy. I'm unsure if there is any perrimenopause mixed in there also. Anyway I went to Surgery on Thursday and saw yet ANOTHER GP. I took a list of bloods I wanted testing which was all my thyroid bloods and D3, Ferritin, Folate and the female sex hormones. She just turned round and said where have you got this off google, She told me TSH is the most important ont to test!! And they definatley do not give T3 out. I told her all these symptoms and how ill I was feeling and she has put it all down to Anxiety like the other half a dozen GPS at the surgery and she told me to go onto patient uk website and read about anxiety and look up SSRI(antidepressants) and read about them as she will prescribe these!!!! No Way am I touching them!!! I very nearly walked out of the surgery on Thursday my husband knew and gave me the look as if to say no don't. Anyway off I went upto the local hosp for the TSH blood test which has come back at 0.76( range 0.2-4.0) The VitD was 82.4nmol/L . I have found that the GPs and the Endocrinologist are just the same. Have a blood test up your meds or down your meds and come back in 3mth. That's all I've done for 12 years!!! Some days I improve better than others though and I'm not sure why this is. I've just had a really bad week where I hardly get out of bed coz of all the symptoms and then yesterday I felt much better and today I'm much better. Not brilliant but much better. I've piled the weight on so I thought ok I will go and book myself a private Personal Trainer I have been twice not last week coz I was too ill but the week before, it made me feel dreadful I think I frightened the PT the way I felt so ill. This last week I have been following Gluten Free diet. The endocrinologist did check for coeliac and it came back normal but I'm still doing Gluten free. I've also ordered some probiotics and hoping these will help and I'm also going to look into fermented foods. Enough is enough . Any advice would be really appreciated. I did do a post earlier in the week and got a few suggestions inbox about good GP or endos to go see private. I would like try T3 or NDT which I know very little about. I have no problem in getting hold of T3 . I could go on the lab websites and pay privately for blood tests to check all my thyroid ones and my female hormone ones but what do I do then when I'm sat here looking at them. I could do with a Good endo to follow on from the tests.

22 Replies

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  • AngelaC66,

    TSH 0.76 indicates you may be adequately dosed but TSH is a pituitary hormone which says nothing about the thyroid hormones T4 and T3. I would order the tests you requested privately to get a full picture of your thyroid, vitamins and mineral status. thyroiduk.org.uk/tuk/testin...

    When you have the results and ranges post them in a new question and members will interpret and advise.

  • Thankyou Clutter I will order this afternoon. Thankyou for a quick reply

  • I also forgot to say which when I look on the blood test list on the private lab site. They list the what they are going to test for and in that list is C Reactive Protein. My Gp tested for this in the test I went for on Thursday and the result was

    Serum C Reactive Protein level 21mg/L [ <10] - outside range

    And says see GP. Not sure why she tested this but won't test any of the others

  • AngelaC66,

    CRP is an inflammation marker and 21 is high so your GP may want to do further tests to see why.

  • They did tell me with having bad joint pain I had Polymylagia at one time and put me on steroids for nearly 12 months and I said I'm not taking these no longer and I stopped them about 11mths ago. I take 5000iu of Vitamin D3 everyday

  • AngelaC66,

    I had awful knee and hip joint pain when I was vitD deficient. Correcting deficiency resolved the pain but my levels became far too high when I continue supplementing 5,000iu daily x 9 months and for the past couple of years I've been taking 5,000iu per week and 10,000iu per week during Dec and Jan.

    You should have vitD blood tests one or twice a year to check 5,000iu daily isn't raising vitD level too high.

  • Had VitD test on Wednesday this week came back as

    Serum Total 25- Hydroxy VitD Level 82.4 nml/L

    Total 250H VitD <30 nml/L indicates deficiency

    30-50 nml/L indicates insuffiency

    >50 nml/L indicates VitD sufficiency

    Change in VitD threshold as recommended by NOS Sept 2013

    I don't understand any of that

  • AngelaC66,

    82.4nmol/L is good. I would reduce to 5,000iu alternate days to maintain level.

  • Thankyou Clutter I will do that

  • You could have a private blood test by one of our recommended labs. Members who have them can vouch on the home blood tests, usually by pin-prick. You have to be well-hydrated of course and drink water about two days before (don't overdo it of course :)

    You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

    The tests always have to be done at the earliest, fasting (you can drink water) and allow 24 hours gap between your last dose and the test and take afterwards.

    Don't let the GP frighten you off Google and in fact you can tell her you've taken advice from the NHS Choices for information and advice about dysfunctions of the thyroid gland, Thyroiduk.org.uk.

    All of us on this site have 'been there - done that' and then recovered our health by Do It Ourself.

    They have absolutely no idea how unwell we can be. In fact I was surprised I felt so much more unwell when given levothyroxine than before I was diagnosed with a TSH of 100.

    Always get a print-out of your ranges for your own files and you can post if you have a query.

    You can get well but by following a course that allows you to be optimally prescribed rather than the doctor only taking account of the TSH alone. TSH is fine for diagnosis but once on thyroid hormones it is how 'we feel' which is the best way forward when we've reached an optimum dose.

    Many do fine on levothyroxine if dose is at an optimum which allows you to have optimum T3 in your receptor cells. Levothyroxine is T4 and inactive, T4 converts to T3, the only active thyroid hormone required in our billions of receptor cells, the brain contains the most. Physchiatrists use T3 for depressed patients but we aren't usually depressed but can have low T3 which means we feel very unwell.

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

    Your GP should test B12, Vit D, iron, ferritin and folate. Deficiencies in these can also cause problems.

  • If you are going to do private testing then the best one is :

    If that vitamin D result you give is recent then you won't need to pay for that to be tested again so buy this test :

    medichecks.com/thyroid-func...

    or this

    bluehorizonmedicals.co.uk/T...

    If the vitamin D result is over 3 months old then go for this test - vitamin D can sometimes drop a lot over winter :

    bluehorizonmedicals.co.uk/T...

    or this

    medichecks.com/thyroid-func...

    ***

    Until midnight on Sunday, Medichecks are offering discounts on Thyroid blood tests :

    healthunlocked.com/thyroidu...

    Once you have some results you should type them in to a new post, including reference ranges, and ask for feedback. Alternatively you can take a picture and upload it into a new post. Note that you must remove your identifying details. Also take a photo which is big enough to read in good light. And note that this website only allows one picture to be posted in the first post of a thread, and not in any replies.

    ***

    The early stages that we have to go through to help ourselves get better are :

    1) Get nutrient levels optimised, particularly vitamin B12, vitamin D, folate and ferritin. Levels which are not optimal can make us feel terrible. There are other nutrients which help many people too e.g. selenium, magnesium, zinc, copper.

    2) Get thyroid hormone levels optimised - and that is often difficult even when sourcing our own meds.

    3) If problems still exist after stage 2 then investigating adrenal health is next. High or low cortisol can reduce conversion from T4 to T3, and generally makes people feel dreadful.

  • Thankyou for reply I've ordered from medicheck 👍🏻😀

  • Sack the GPand find another that is more sympathetic to your symptoms.

  • Well I have tried with about 7 of them and they all put it down to anxiety on its own has an illness when I know dam well that something's causing it. I think I need to move surgerys now. Thanks for the advice

  • Might be worth your while checking Dr Izabella Wentz on Youtube. She, herself was subjected to the same kind of thing and went on to become one of the foremost experts in the field of thyroid issues -especially Hashimoto's where people are generally told their TSH and T4 are in the normal range so there is nothing to worry about -just keep taking the tablets as usual -however, T4 needs to be able to convert to the more active T3 for the thyroid to work efficiently and they don't routinely test for T3 so there are masses of people being treated as hypothyroid when, in fact they have Hashimoto's-an autoimmune condition. Ironically there have been various pieces of research done that indicated that there is a link between Hashimoto's and Alzheimer's -also, that once one has one auto-immune condition, it can act as a doorway for other autoimmune conditions.

    Izabella Wentz is keen to help people to recognize what triggered their thyroid issues and has worked out pathways to get their thyroid under control -gluten and lactose free diets being amongst them.

    Dr John Bergman has over 450 Youtube videos -some of them dealing with thyroid issues. He also puts thyroid issues into the wider context of what is happening throughout the body -how the thyroid affects other systems and, in turn is affected by them.

    Hope this helps.

  • Thankyou for the reply Gazebo. I've been in a right state for last 2 days the anxiety is Absolutley dreadful. I'm thinking this is more perrimenopause related but I really don't know. I was that anxious this aft I nearly went to local A&E to plead for some medication. ANY. I just can't stand much more of this. I don't think thyroid and perrimenopause are a good mix. I'm not feeling good

  • Sorry to hear that you are having such a rough time. Wondered if you have tried looking for support groups / forums that might be able to give you advice / suggestions of ways to handle anxiety etc? -eg: A quick Google search turned up many agencies / support forums such as NO PANIC nopanic.org.uk

  • Thankyou for reply Gazebo. No support helps with that anxiety. It's caused by female hormones I just have to ride it out. I've had 5 days now feeling not too bad. It just comes on and then fades away

  • So sorry.

    I did a quick Google search using the terms

    THYROID AND ANXIETY TREATMENT

    and there is a lot of info available on reasons for thyroid-related anxiety (much of it relating to the Adrenal gland which also affects hormones) - and ways of tackling it long-term - not just when the anxiety itself arises. The long-term approach involves identifying the root cause(s) instead of just treating the presenting symptoms -doing things like identifying stressors/ looking at diet and nutrition/looking at vitamin and mineral deficiencies, the reasons behind them and addressing them/ looking at gut functioning (about 70 - 80% of our immune system is located in the gut and conditions like leaky gut can result in particles seeping through the gut and into the blood stream that transports them to various locations such as the thyroid. The immune system detects the deposit in the thyroid and interprets it as a foreign body or threat so starts attacking it - thus giving birth to the start of an autoimmune condition etc. Other things they look at are environmental factors -eg pesticides / electro magnetic fields/ chemicals used in personal care products/ water (fluoride and chlorine) / mercury in dental amalgams etc. There are all sorts of other things that come into the equation -eg: stressful relationships at home and at work etc etc. Unfortunately it's not a quick fix as it involves a lot of work in identifying the causes and either eliminating them or working them through. Have embarked on that course myself. Not easy but reckon it'll be worth it. The brain fog is not as bad as it used to be and have started to lose a little weight -slowly but surely.

    Glad to learn that you have had a bit of a reprieve over the last few days. Long may it last!!!

  • Hi I've changed my diet totally 2 weeks ago also. Nothing processed, just fresh salad,veg,meat or fish and natural yoghurt and Gluten free cutting out certain foods. I've also started probiotics daily and I've sent off for a book on fermented foods so I can make things to benefit the gut. My Endocrinologist did an Adrenal test a few months ago and it came back clear, I couldn't sleep at the time and just felt wired but tired about 11pm and was still sometimes awake at 6am but that's just now gone ok. It's all a learning process. Wish I had changed my diet a long time ago instead of letting myself go then I might not put all this weight on. Onwards and upwards and I'm keeping smiling!!! I've got blood tests kits come for all thyroid bloods and another test to check my female sex hormone levels. So will get those sorted this next week then I can post thyroid result on here

  • I imagine the adrenal test your endocrinologist did was a blood test first thing in the morning. Apart from when trying to diagnose Addison's (severely low cortisol output) or Cushing's (very, very high cortisol output) the blood test doesn't tell you a lot.

    It certainly won't tell you anything about why you are wired and tired at 11pm.

    Cortisol production has a circadian rhythm, it isn't constant throughout the day. See this picture :

    data.integrativepro.com/ima...

    As a result a single blood test isn't helpful for most people to identify problems.

    The other thing is that cortisol (like thyroid hormones) is carried around the bloodstream by transport proteins called globulins. There are different globulins for different hormones. When a blood test is used to measure cortisol it measures a combination of cortisol attached to globulins and cortisol which is unattached. Your body can only make immediate use of the unattached (i.e. free) cortisol. So knowing the total doesn't really get you very far.

    What we really need to know is the free cortisol throughout a 24 hour period to know whether our levels are right.

    The good news is that free cortisol can be measured in saliva. And saliva tests can be bought privately. They don't normally cover a full 24 hours. There are 4-sample tests available, there are 6-sample tests available. There is a test which includes a DHEA test with it.

    1) 4-sample test plus DHEA - read the different tabs and the additional resources :

    gdx.net/uk/product/adrenal-...

    2) 4-sample test, no DHEA :

    bluehorizonmedicals.co.uk/e...

    3) 6-sample test, no DHEA

    bluehorizonmedicals.co.uk/e...

    For info on ordering, and any possible discounts :

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

    For info on ordering Genova tests specifically, read How to order and How to get your test results :

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

    Blue Horizon often have special offers on so look out for those.

    Once you have your results, post them into a new post and ask for feedback.

  • Sounds like you have a good handle on it. It's a bit of a slog but, fingers crossed, it'll be worth it. Doesn't half make typing difficult though! 😉

    Will look forward to hearing how you get on. In the mean time, keep on smiling! 😊 😊 😊

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