TSH & Free T4 levels

[coffeepot]

Hi

Some excellent information on here. I have some blood tests which indicate Serum free T4 levels at 17 pro/L but Serum TSH level at 0.02. I have ups and downs of energy and wonder whether this is related. Would value a view please.

[SeasideSusie Remembering]

Coffeepot

There is no information in your profile, do you have a diagnosis of a thyroid condition and are you on any thyroid meds?

If you can let us know, also can you add the reference ranges for your results (they vary from lab to lab), then we may be able to help.

Are TSH and FT4 the only tests done? For a full picture then as well as those you need FT3 and thyroid antibodies

[coffeepot in reply to SeasideSusie]

Sorry, yes, I'm on 200mg thyroxine. Had a full thyroidectomy some years ago, I was also diagnosed with Graves disease. The TSH and FT4 referred to in my post were the only tests done as part of an GP annual review. Many thanks SeasideSusie

[SeasideSusie Remembering in reply to coffeepot]

We need reference ranges please. We know the TSH is below range but we can't interpret your FT4. The ranges we see here are 7-17, 9-19, 11-23, 12-22, so we can't possibly comment on your FT4 until we know the range.

[coffeepot in reply to SeasideSusie]

Sorry, it says on my print out that for my TSH which is 0.02 the reference range is 0.35-4.7. For my FT4 at 17pmol/L, the range is 7.8-21. Hope that's what you mean when you say reference range. Many thanks

[SeasideSusie Remembering in reply to coffeepot]

Yes, that's it, thanks.

So your TSH is below range which often freaks out doctors who then say you're overmedicated. However, your FT4 is 70% through range so as this result is within range you can't be overmedicated.

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. So theoretically, your results are good.

However, as mentioned, for a full picture we need to see FT3 as well as FT4, this tells us whether you are converting T4, which is a storage hormone, into T3 which is the active hormone. Low T3 causes symptoms.

But as you mention that you have ups and downs of energy, TSH and FT4 results alone can't tell us anything about that.

Have you ever had Thyroid Peroxidase and Thyroglobulin antibodies tested? If positive that could suggest autoimmune thyroid disease - Hashimoto's - which cause fluctuations in symptoms and test results. It is possible that you can have Hashi's and Graves.

Something else to test are nutrient levels, low levels or deficiencies bring their own symptoms so it's a good idea to check

Vit D

B12

Folate

Ferritin

Are there any other tests that have been carried out?

I'm off to bed now but will check back tomorrow, and I'm sure other members will comment too.

[coffeepot in reply to SeasideSusie]

That's fab SeasideSusie, thanks so much for this information, that's stuff I didn't know or even think of. I've never had Thyroid Peroxidase and Thyroglobulin antibodies tested and so will go back to my GP on this. I was low on VitB12 but have been taking supplements via the GP for about three months, not been back for a check yet but perhaps it's timely to do so. Didn't know you could have Hashi's and Graves together but glad to be enlightened.

[NWA6]

Hi Coffeepot 👋 You’ve still got so wiggle room with your T4 level so an increase would be appropriate.

A question to the more experienced/knowledgable forum members (excuse me while I use your post to do this 😬😂) If there is no thyriod, does the pituitary still send out TSH? Where are they sending it too? There’s nothing to receive the message? If Someone has had a TT or if a Hashi’s victim has a dead thyriod they don’t make the 20% of T3 from their thyriod so surely they would need to add T3 as surely they can’t make up this huge percentage of total t3 from conversion of synthetic Levo?

[coffeepot in reply to NWA6]

Hi Paula6, thanks for your reply and I will certainly go back to my GP for a review, including for T3 etc. I think you also ask a very interesting question and I also would be intrigued as to the answer to the TSH/T3 question.

[pennyannie]

Hello Coffeepot

I'm with Graves Disease post thyroid ablation in 2005.

Graves is an auto immune disease and as such it is for life. It's in your blood and DNA.

There is probably a genetic predisposition, maybe a generation away from you, and it can be triggered by a sudden shock, such as a car accident or unexpected death.

When Graves antibodies attack such a major gland as the thyroid, symptoms can be extreme and the Nhs consider being hyperactive life threatening and think that by removing the thyroid, either by surgery or ablation, they can solve the problem.

The Nhs also believe they can manage hypothyroidism better than they can manage an overactive thyroid so after treatment we are discharged back into primary care with an additional diagnosis of primary hypothyroidism in addition to Graves Disease.

Well it is somewhat simplistic to just remove the target of an attack, and not to look at the cause, which is an auto immune disease, but this seems to be what happens.

Living without a thyroid can come with it's own set of problems.

A fully functioning working thyroid would be supporting you, on a daily basis with approximately 100 T4 + 10 T3.

Some people can get by on T4 ( Levothyroxine ) alone, some people at some point in time stop converting T4 to T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.

Personally, I believe if there has been a medical intervention and the thyroid ablated or surgically removed both these vital hormones should be on the patients prescription.

Graves patients can have TSI antibodies that " sit on " and take control of the TSH - hence why you might have gone overactive in the very beginning of your illness.

So, your thyroid is not there now to simulate but the TSH maybe stuck, giving you a false low TSH. reading, and your doctor thinking you are overmedicated.

It is therefore imperative that you are not monitored on just a TSH read but on T3 and T4 blood tests with the objective being to have these two hormones balanced and generally in the upper quadrants of their relevant ranges, for patient wellness.

It is documented that Graves patients may feel better on a T3 + T4 dosage regime or switching to Natural Desiccated Thyroid.

The following have helped me :-

Graves Disease A Practical Guide by Elaine Moore. This lady has the disease and found no help in the late 1990s so wrote a book to help others. She now runs a very well respected website on all things Graves with open access for everybody wanting help and advise. It is stateside so medical protocol is slightly different but a very useful learning tool.

Tired Thyroid by Barbara S Lougheed is another book amongst other things debunking the TSH as an effective measure of anything for Graves patients, she herself being with the disease. I believe she also runs a " blog " so ease of immediate access should you wish.

Last but by no means least :- Your Thyroid and How To Keep It Healthy by a doctor who actually has hypothyroidism. Dr Barry Durrant - Peatfield writes in an easy, insightful, sometimes funny way about all things thyroid, and the implications of when things go wrong and what can be done to reset the system.

The thyroid is the conductor and responsible for full body synchronisation including your mental, physical, psychological and spiritual wellbeing, and we need to compensate for the fact that we have lost this major gland.

It's a massive learning curve, there is so much to take in and understand, but thanks to this site, I'm getting my life back, and so can you.

[coffeepot in reply to pennyannie]

Many thanks for your reply pennyannie. Sorry for not replying sooner but I've just come out of hospital with a non related issue. I can see how right you are re: the NHS and if I had my time again total thyroidectomy would certainly not have been a decision I would have walked aimlessly into on the advice of medical professionals - there have been so many repercussions of doing so and I've never felt 'quite right' since. Thank you for your reading suggestions, I will certainly have a look and I will certainly follow up with the additional tests. This site is brill and I do hope I can back on track as you are because of it

[pennyannie in reply to coffeepot]

Yes, Graves is poorly understood but take heart in the fact that of the two options you may have been given, surgery is the better of the two. I had no choice and destined for radioactive iodine treatment, the consequences of which the Nhs are in total denial, though it is well documented in Elaine Moore's book.

It's interesting that Prof. Toft has written :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 131 or surgery in patients with Graves Disease, irrespective of age or number or recurrences of hyperthyroidism. "

He also suggests that post surgery and RAI - Levothyroxine may not be the only thyroid hormone replacement treatment option.

I don't know if there is any correlation in these statements being released at a time when he was reaching retirement from the NHS.

All I know is my journey and that fact I have found no help or assistance in the Nhs and have had to resort to self medicating to try and get my life back.

I wish you a speedy recovery with the unrelated surgery and suggest you read up all you can on Graves as it seems we have to be our own best advocates, and trust you may find an enlightened medical professional along the way to help you manage your future health concerns.

[coffeepot in reply to pennyannie]

Many thanks pennyannie, I much appreciate your time and advice. I'm sorry to hear it's been such a rocky road for you though I've never felt 'on top form' since my surgery in 2005. I had not realised but for finding this site recently that there was such a massive wealth of information and expertise here - which I am so glad I have now found, and which I will certainly utilise to build my own knowledge base for my situation X