3 years post TT - help please for new treatment... - Thyroid UK

Thyroid UK

111,210 members129,264 posts

3 years post TT - help please for new treatment strategy


Hi all.

Since having a TT for Graves 3 yrs ago I have been 'chugging' along, experiencing new and varying symptoms that I have coped/dealt with/managed with varying degrees of success and failure. I take vast quantities of expensive vitamin/mineral/enzyme support and levothyroxine. Despite keeping relatively fit, managing a healthy weight I am in almost constant physical pain, have a high LDL and dreadful insomnia. My GP has fobbed me off with a fibromyalgia and chronic fatigue diagnosis, neither of which I accept. Of course I am tired, I have insomnia!

I am now keen to try and address/improve the symptoms I describe above, but am not sure where to start. I presume the first step is blood tests, but don't know what tests to ask for. I am then keen to get these tests looked at by A.N. Other than my GP, and to possibly try a different approach to treatment.

I would really like to hear from others with knowledge/experience of this apparently common problem of treating post TT patients.

Many thanks in advance


11 Replies

I would guess that you're undermedicated, and need some T3 added to your dose, instead of just levothyroxine. This post may be helpful: tiredthyroid.com/blog/2014/...

Here's one way to calculate an approximate dose: tiredthyroid.com/blog/2014/...

It's a very conservative formula, meaning you may need more, but at least it gives you an idea of what a bare minimum for you should be. Especially with Graves', you can't dose by TSH.

Louisa, ask for TSH, FT4 and FT3. They will tell us whether you are converting T4 to T3 well. Make sure you get the lab ref ranges with your results as it isn't always possible to interpret results without them. Many thyroidless patients don't convert well and benefit from adding T3 to Levothyroxine. Some labs decline to test FT3 unless TSH is suppressed. You can order private tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

It's also a good idea to check ferritin, vitamin D, B12 and folate via your GP or the link above as low levels, common in hypothyroid patients, can cause musculoskeletal pain, fatigue and low mood.

superb_lulu in reply to Clutter

Hi. Herewith bloods if you don't mind having a look,

TSH 1.34mu/l (0.34-5.60mu/l

FT4 15.5pmol/L (7.9 -20.0pmol/L)

FT3 4.2pmol/L (3.8-6.0pmol/L)

I have put their ranges in brackets, hope it all makes sense. Would be great to hear what you think about these results. Thanks Louisa

Clutter in reply to superb_lulu

Louisa, I think it would help if you had a 25mcg dose increase to pull up your FT4 and FT3. Most people are comfortable with TSH just above or below 1.0 with FT4 in the top 75% of range and FT3 in the top third. Read the comments of Dr. A. Toft in the Treatment Options section of the link below. If you want a full copy of the Pulse article to show your GP email louise.warvill@thyroiduk.org.uk


superb_lulu in reply to Clutter

Thanks very much. Helpful info. Louisa

superb_lulu in reply to Clutter

One more thing, I am interpreting these results as showing adequate t4 to t3 conversion. Are you in agreement? Thanks again,Louisa

Clutter in reply to superb_lulu

Louisa, you are converting T4 to T3 but both FT4 and FT3 could be higher. When you are undermedicated conversion won't be optimal. Low TSH + high FT4 + low FT3 indicates a conversion problem.

The dose increase should be 25mcg daily and bloods should be checked 6-8 weeks after increasing.

superb_lulu in reply to Clutter

Oh, so many questions, 25 mcg increase, per day/week/month?

I chugged along for 32 years. I wish I had known then what I know now. I agree that adding T3 could work, but I personally found that T3-only is the only true answer.

Also. keep an eye on those Graves' antibodies. If they rise, they will suppress your TSH and everyone will tell you you're undermedicated! T3 is the important one to test. if the T3 is high but still in the range (and most Graves' patients NEED high in the range because of the previous hyper condition) then you are OK.

Be prepared to consider T3-only if you still have symptoms. For me, even NDT allowed symptoms to creep back, so I have dispensed with the NDT and gone back to T3 only.

Plus, of course the usual array of vitamins and minerals! And for those over 50 I can highly recommend COQ10 - the Ubiquinol form.

Marie xxx

superb_lulu in reply to marram

Thanks very much for your helpful reply. I am on the road to recovery ;-). Louisa

shambles in reply to marram

Hi Marie, do you have a test for Graves' antibodies? Also this is really interesting, you say that even when taking meds even when you have no thyroid the antibodies can still affect the TSH? This for me would make a huge amount sense.

You may also like...