Need advice regarding testing and treatment

I have suffered from exhaustion and depression since puberty, neither of which were treated for thirty years. I was then diagnosed with post-partum thyroiditis in 2009 and eventually Hashimotos disease. I also suffer from other autoimmune conditions - vitiligo, Raynaud's disease, and eczema caused by a gluten allergy (I do not have antibodies indicative of Celiac disease, so this is not diagnosed).

I was treated with Levothyroxin from 2009, but I elected to come off in 2011 as I believed I was severly over-medicated (T4 20 and TSH <1 and suffering from sweats, palpitations and insomnia). My GP then left the practice and since then I have not encountered a GP who will consider treating with Levothyroxin despite continued low mood and exhaustion and now being medicated with 40mg pd of citatlopram (SSRI for depression). I have been completely glutenfree for 4 and a half years. I have also had a number of extensive courses of CBT and psychological support for the last 5 years and have meditated every day for the last 2 and a half years. I take 3,000 IU of vitamin D daily.

I am not prepared to accept that I am 'just' depressed and to remain this way for the rest of my life. I am sure that my condition is physical and that thyroid function has a part to play. My GP refuses to refer me to a consultant or to treat me as my tests are in the normal range (T4 12-17, TSH 1.5 - 3). She insists that as this is the case, I am suffering solely from depression.

I would be very grateful for any advice.

I have posted separately that I am intending to see Proff Grossman privately, but would also welcome any recommendations from members about other doctors in or around London who would be willing to test further and are willing and able to prescribe T4/T3 although I am 'well'.

Many thanks all,

Exhausted Mum

8 Replies

  • It's a pity doctors are so badly informed about the thyroid gland and medicate us according to the whereabouts of the blood test results on a piece of paper. It was best before levo was introduced along with blood tests, we were then given NDT due to our symptoms alone - doctors do not have that skill these days, unfortunately. If they do follow that method they will probably lose their licence.

    These are a couple of links which will be of interest. Also on this link on the left hand side are details of clinical symptoms which you can tick off.

  • Trix, NHS diagnoses hypothyroidism when TSH is over range (usually >5 or >6 in the presence of positive antibodies), or when FT4 is below range. A private endocrinologist may make a diagnosis when TSH is >3 but is unlikely to do so if it is lower.

    Did you feel any improvement in symptoms when you were taking Levothyroxine 2009-2011?

  • Thanks Clutter. I was actually over medicated on the l- thyroxine which is why I came off - had palpitations, sweats, stomach upset etc.

    I've been treated for depression and anxiety with an SSRI and my GP thinks I should just keep increasing that as I am so tired and unable to get up. I feel that what I am suffering is very 'physical'. While I know that depression can also cause physical symptoms, this doesn't feel like depresssion. I can't get out of bed and I'm constantly craving sweet and salt foods and just can't wait to get back to bed after work.

    I don't really know what to ask for from the GP, so I feel I need to see someone else who might have some solutions.

    I've not had antibodies tested since 2011 because my GP says my T4 and TSH are normal. Previously, I've bad positive and negative antibodies. I may try to ask her to do the T3 and antibodies again to take to Proff Grossman.

  • Trix, a pity dose wasn't reduced rather than stopping Levothyroxine.

    Once you've had positive antibodies it isn't worth retesting as they will fluctuate being high after a Hashi attack and subsiding inbetween attacks.

    'Normal' is an opinion. Ask your GP receptionist or practice manager for a print out of your recent results and ranges and post them in a new question for advice.

  • if you are craving sweet and salty foods, sounds like adrenal that. Have you had your b12 tested, ferritin serum, and d3 recently......all can cause you to feel terrible and tired.

  • I've had FBC recently but my GP won't give me the results. I've previously had low B12 and D3 (I take 3000 IU D3 per day). My GP won't test D3 as she says everyone has low D3. I haven't asked for B12, though after I posted yesterday I read all the info on the site about vitamins and thought I probably should ask.

    It's frustrating that the GP who diagnosed the hashtnotos (and trajned under Proff Grossman) has now left the country and my current GP will only treat the numbers.

    I'll read about adrenal fatigue now, too and see what I am do for self help

  • Trix, by law the doctor CANNOT refuse you your blood results Freedom of information and they may charge a nominal fee. Does it not make you suspicious that he refuses?.

    Jo xx

  • Sorry also had a short synactin test in 2011 at Barts and was told that was normal - though what it was testing was not explained to me

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