Secondary hypothyroidism

[Ruth63]

As I'm possibly looking at secondary hypothyroidism, I was wondering if anyone could share their experiences of this and how diagnosis was made along with symptoms?

[greygoose]

I don't have secondary hypo, I have Hashi's, but a preliminary diagnosis would be made if your TSH was low, but so were your FT4 and FT3. After that, the other pituitary hormones would need to be tested, such as HGH, FSH and ACTH; and possibly a brain scan.

The symptoms would be those of low hormones, which can be many and varied.

[Ruth63 in reply to greygoose]

My tsh is 0.886 (0.27 - 4.20)

Ft4 12.5 (12.00 - 22.00)

Ft3 3.81 (3.10 - 6.80)

So borderline low, I have goiter with voice fluctuations ultrasound ruled out cancer as no nodules just a bulky thyroid, I'm so tired can't stand the heat and have various joint aches and pains.. I feel awful yet as bloods still in range doctors won't do anything so I'm not sure what my next step should be 😢

[greygoose in reply to Ruth63]

Yes, that looks very much like secondary/tertiary hypo (Central hypo). Your Frees are very, very low, so not surprising you have symptoms. Have you suggested to your doctor that you have Central hypo? GPs don't know anything about it, so you would have to request a referral to an endo.

[Ruth63 in reply to greygoose]

They just don't seem interested at all, in the past couple of years I have had surgery on both my Achilles tendons and yet when I went for my post op appointment with my ankle consultant even he suggested my thyroid could be a problem with the on going swelling, yet my doctor still won't entertain me.. I'm at a total loss of what to Do, it seems my only option is to wait untill my ft4 and ft3 drop even lower or tsh drops... I'm honestly at my wits end.

[greygoose in reply to Ruth63]

I can imagine. You're right, doctors aren't interested in thyroid problems, and know nothing about them. You're probably going to have to nag him into submission! Or, could you see a different GP? Waiting is an option, of course, but not a very satisfactory one.

I can only suggest that you bombard your doctor with information about Central hypo, stressing the importance of testing for other pituitary hormones. Because the danger is that, if it's the pituitary at fault, then your adrenals could also start mal-functioning.

Did your ankle consultant not write to your GP stating his belief in a thyroid problem? That usually helps.

[Ruth63 in reply to greygoose]

He did mention thyroidism in his letter, but as tsh always in range then Dr just not interested, I will try again with info but I doubt get me anywhere 😢

[greygoose in reply to Ruth63]

I'm afraid you often have to insist. They are so very ignorant and are harming people's health with their indifference. Strange behaviour from people who have sworn to do no harm.

[Sallybones]

Hi Ruth63 I'm possibly in the same boat as you, re possible Secondary Hypo, but have been referred on for the second time in 4 years to another Endocrinologist. Blood tests and xrays next week before I see him.

I'm interested to know how you get on so hopefully you will update if any progress?

SallyB

[Ruth63 in reply to Sallybones]

I will and same goes for you keep me up to date how your getting on, lots of luck x

[Sallybones in reply to Ruth63]

will do xx

[millymumpkin]

Couldn't agree with greygoose more. Disgusting that no-one is interested in getting you back to feeling better. And the ignorance about secondary & tertiary hypothyroidism is unbelievable too. Can you maybe pay for a private consultation?

I am the same as you - low "normal" TSH, low "normal" (just in the normal by 0.1) T4 & T3 low too. Maybe "normal" is the wrong expression for us! I live in France & get friends to lie in the chemist (oh dear, I've lost my thyroxine or other big fib!) to buy me levothyroxine over the counter. My GP here is lovely, but normal is normal everywhere, despite me having a partial thyroidectomy (haemorrhagic benign tumour -adenoma - but so bloomin painful I couldn't move my neck or sleep), an enlarged gland & 6 nodules - but I am now normal because the numbers say so. So, I get my Ft4 & Ft3 checked on a private blood test, but I know when I feel better anyway. I only need 25mcg per day to feel OK. A pack of levothyroxine is only a couple of euros - sad they keep us "ill" for such a cheap price.

I was thinking of trying Thyro-Gold which you can buy without prescription, but I am vegetarian, so a moral dilema & the cost & postage from the USA is crazy. Just a thought for you though?

It really annoys me that many of us have to self-medicate to feel well. And get told it's our age, the menopause or depression. No wonder we feel down - we don't feel very well. I am extremely feisty, loved helping on a medical site for doggies, but I almost lost my spark. Don't you dare give in. Get as much info as you can to support your "case" with your GP. There are some very knowledgeable people on here who are fantastic at helping others. Greygoose is one of them.

I don't post very often, but hope you find a decent endo soon.

Best wishes from me & keep feisty

[Ruth63 in reply to millymumpkin]

What lovely words Thank You, it does seem that they blame everything else on our symptoms, they keep giving me antidepressants yet I know that's not what it is, I love this group as it'snice to know I'm not on my own, I will stay fiesty and keep trying, you stay strong too, let me know how you get on, xx

[millymumpkin]

I am not a fan of antidepressants long term without very good clinical reasons. It's like sweeping you under the carpet! Good old amytryptaline is great for nerve pain though, so not included if for that reason. I don't know if it's true that GPs are paid for prescribing antidepressants & statins - I hope not..... mmmm.

It's very hard to keep on fighting when you feel like you have as much energy as "an asthmatic ant carrying a very heavy bag of shopping" as Blackadder once said. Sometimes, talking to proper old friends helps - mine told me I don't have a lazy or pushover bone in my body, so I must be ill. That helped a lot. My hubbie is of the same view - as I've always been quite a strong character, something had to be wrong. Remember that, dear Ruth. It's not you, it's them. Fiesty is good!

I confess I am an ex-nurse (years ago) & can assure you doctors are not always right, often unsympathetic, have selective deafness & sometimes jump to the easiest conclusions. But the NHS is under terrible strain over there. Finding the doctors that are not like that is the answer. There are some good ones out there & trying some thyroxine to see if it helps you is a no brainer - you might feel so much better with a higher T4 - I certainly do. I am back to full brain clarity &, for me, that was the worst thing - damn brain fog was awful.

Please do post your blood results on here each time - you will get good advice always.

[millymumpkin]

Forgot to say before the TSH & blood tests, achilles tendon reflex was a useful diagnostic tool for thyroid function

ncbi.nlm.nih.gov/pmc/articl...

and is still used in countries where blood tests are not readily available or affordable, along with looking at other symptoms. I wish doctors still used the old symptom methods in addition to diagnostics by blood test numbers (a normal taken from sick people's tests incidentally). Unfortunately, they are taught that numbers are the be all & end all. WRONG! Getting your patient better is the goal, surely?

[Ruth63 in reply to millymumpkin]

It's interesting to read about the Achilles tendons esp as I've had loads of problems with mine resulting in 2 operations, and yet I still have swelling, it was never mentioned it could be thyroid, untill my ankle consultant noticed my goiter and heard my voice, I will look in to this further x

[Ruth63]

Thank you I will look into the link you sent. Hope I can manage to find a good Dr , so far I think I've seen 4 different ones so may have to change my gp practice, xx

[millymumpkin]

I know it's not ideal, but if I were you, I'd find a private endo - paying for a consultation might be the only way you get proper help - I am truly sorry you are being treated so poorly. Here is a list of symptoms

thyroiduk.org.uk/tuk/about_...

You could try ticking which you have & taking them to your next appointment - wishing you luck!

xx