Is it all in my head?: Hi everyone Can you please... - Thyroid UK

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Is it all in my head?

deanna69 profile image
8 Replies

Hi everyone

Can you please give me some more of your expert advice? Have just been back to see the endo who tells me that although I have Hashis I am not hypothyroid and my levels have actually improved! Yey me my original tsh was 4.89 and is now 3.2 without any medication and my T4 is 13. At the original consultation I mentioned that my sleeping pattern wasn't good and I had chronic fatigue and tiredness along with feeling cold, dry skin weight gain aching joints you know the usual he is now advising my gp to send me to a sleep clinic as he says my tiredness is related to my snoring!! I questioned my last bloods asking him what my T3 was he said he didn't test that just Tsh and T4 I asked why he said he tdidn't think it was relevant! Upshot is he's prescribed 50 mcg levo thyroxine for 3 months but he feels that this will have a placebo effect more than physically improving me I just feel like he thinks I am making all this up :(

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shaws profile image
shawsAdministrator

This was a very similar post this morning and I enclose the link. I hope it will be helpful.

healthunlocked.com/thyroidu...

It really amazes me that people who are supposed to be experts get paid for their advice.

deanna69 profile image
deanna69 in reply toshaws

Gosh it's like we have Had the exact same conversation! Seriously everything that the previous lady posted I have experienced and are still experiencing only difference is that my endo is now trying to blame sleep apnea on a lot of my symptoms because I snore!! I understand that with Hashis the blood results can fluctuate but why don't they take what the patient says they are experiencing as seriously as the blood test results??

shaws profile image
shawsAdministrator in reply todeanna69

Before the blood tests and levothyroxine were introduced, patients were diagnosed according to clinical symptoms and prescribed NDT till symptoms were relieved.

Nowadays, ignorance is bliss as doctors are not trained in clinical symptoms and don't know them. If TSH is 'in range' the patient may have continuing and additional problems as they remain untreated or given medication for the clinical symptom alone. Some doctors believe their patients to be hypochondriacs because of the different problems the patients present.

drhyman.com/blog/2010/04/20...

Clutter profile image
Clutter

Deanna, if he thinks your symptoms are in your head and FT3 isn't important he doesn't understand thyroid disease and is probably better versed in diabetes. Some, too few, endos take the view that Hashimoto's will eventually destroy your thyroid and that Levothyroxine can delay the progression of Hashi's and resolve hypothyroid symptoms.

50mcg is a low starter dose but you should feel some improvement in 7/10 days. Levothyroxine should be taken with water on an empty stomach one hour before or two hours after food and drink, two hours away from other meds and supplements and 4 hours away from calcium, eostrogen and iron.

Ideally a follow up blood test will be done by your GP 4/6 weeks after starting Levothyroxine to monitor levels and increase medication if TSH remains high. TSH just above or below 1.0 is usually desirable for people on medication although some need it lower or suppressed to feel well. You could also ask your GP to test ferritin, vitaminD, B12 and folate as deficient/low levels present symptoms similar to hypothyroidism.

Private FT3 tests can be ordered from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

deanna69 profile image
deanna69 in reply toClutter

Thank you for your reply as he was telling me that my results were perfect and that I am definitely not hypothyroid as per my results I questioned why he didn't do the T3 and then went on to tell him that I was a member on thyroid uk and had done some research into how the thyroid functions and that results from blood tests don't necessarily tell the whole story he was very dismissive but wants to see me in 3 months after taking this therapeutic dose of levo and sent me away with a blood request form for T3 so at least I have managed to get that out of him I just feel that he is going to be reactive rather than proactive in treating me meanwhile you have to feel like crap silver lining I tested negative for coeliac antibodies but have felt better since going gf so will keep on with that I am so glad I found this site as the information I have obtained has been invaluable x

Clutter profile image
Clutter in reply todeanna69

Wouldn't it be nice if you could transfer your perfect bloods and symptoms to him for a month's trial. Hard to buy "placebo effect" when your symptoms improve, TSH falls and FT4 rises.

Deanna, he probably will be reactive as it doesn't sound as thyroid is his speciality so it is up to you to get him up to speed by leading him :-D

deanna69 profile image
deanna69

Clutter can I just ask another quick question what is an ideal thyroid profile in terms of figures? He was telling me that 3.2 was perfect never mentioned the T4 of 13 if that was ok or not could you just clarify it for me thanks x

Clutter profile image
Clutter in reply todeanna69

Deanna, For someone on meds TSH just above or just below 1.0 is usually comfortable but some people need a lower TSH around 0.5 or even suppressed <0.04 to feel well. FT4 and FT3 are 'ideal' in the top 75% of range.

Undermedication to keep people within range is a curse.

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