Newly diagnosed and unsure what it means.

[Littlecaterpillar]

Hi all,

I have been experiencing fast weight loss, sweating, hair loss and heart palpitations.

1 month ago had blood tests to look at thyroid function. TSH was 0.003 and T4 was 10. GP said looked normal but I asked for a repeat just in case.

Results a month later have TSH undetectable, T4 16 and T3 8.5. GP said that means I have T3 thyroid toxicosis. No palpable enlarged glands so referal to endocrinologist.

Was does that all mean? Anyone know of good reference ranges?

Thanks!

[PurpleNails Administrator]

There is no standard range reference, ranges vary between labs, they can be found on the print out of the results or if you have online access. Try and obtain them.

Your thyroid levels are rising, (although FT4 of 10 is low by most ranges, and the TSH of 0.003 is under range)

TSH, thyroid stimulating hormone, tells the thyroid to produce new hormone, one of your levels (the FT3) are now high so it lowers (or suppresses) the TSH. In healthy thyroid function the FT4 & FT3 is fairly balanced. Sometimes the conversation of FT4 to FT3 is affected so FT4 can fall high in range but FT3 low in range. So it’s a little more unusual for FT4 To still be in range but your FT3 Is above range. This is called T3 toxicosis.

Referral to endo is right approach. A repeat blood test of TSH, FT3, FT4 with thyroid antibodies.

Antibodies will determine if you have either autoimmune thyroiditis (hasimotos) or Graves’ disease which could be causing the hyper activity.

Thyroid Peroxidase (TPO) and Thyroglobulin (Tg or TGab) are often positive in BOTH Hashimoto's AND Graves. Hashimotos known as autoimmune thyroid it is can have phases of transient hyper, ultimately hypo). Graves causes continuous hyper. TPO has higher elevations in hahis.

Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb), are high when Graves is diagnosed.

Also important to test vitamin D folate feritin & B12. These can be low when hyper. Ask GP to test test.

Your GP may have suspected a hyper functioning nodule and checked for a lump or swelling on thyroid. I have solitary hyper a nodule and my FT4 was borderline high, Similar elevated FT3 result, whereas Graves tend to be much higher ie 3 or 4 times normal range.

Once you have these results post for further advice.

Have you been given any medication to manage symptoms? I began on a anti thyroid before seeing a specialist & confirmation of the cause. Sometime a specialist can approve a GP to commence but often it’s recommended antibodies are investigated first. If the cause is Hashis antithyroid is not right treatment. I was also given propranolol to relieve symptoms.

[Littlecaterpillar in reply to PurpleNails]

Thanks that is helpful. They want me to see an endo first as been trying for a baby for a long time.

[PurpleNails Administrator in reply to Littlecaterpillar]

With wanting to start a family I can understand why you need answers urgently.

Usually, in most areas of UK there is a waitlist of a few weeks sometimes months to see specialist but with covid chaos waiting times and delays are happening more often than the norm. Hope you are seen quickly.

But you can take steps to help yourself in the meantime.

If your GP is helpful they may test antibodies and nutrients in advance for you. If they refuse there is the option to pay privately for full thyroid function, antibodies and nutrients which will give you a chance to get ahead on things.

See slowdragon list of private companies this post healthunlocked.com/thyroidu...

Start reading up on here, on thyroid UK site about the terminology surrounding thyroid and diagnosis and possible treatments which you might have to later consider.

You might find it helpful to keep a diary of your symptoms, any supplements you take and other medications . Make notes of things you plan to discuss with your doctor and get into habit of obtaining test results and learning how to understand them.

GP practices should provide online access which is ideal as you then able to view results (and other records) without involving doctors and receptionists who tend be evasive. This can take time to set up as you often have to request enhanced access and submit ID.

You can contact the surgery reception and obtain an actual print out of results until you have access.

[Littlecaterpillar in reply to PurpleNails]

I had more blood tests on Monday including antibody test for Grave's. Hopefully I will have answers soon.

[Littlecaterpillar in reply to PurpleNails]

The results came back and I have Graves being started on PTU. Just need to pick up my prescription. Is there anything I need to know about PTU e.g. best time to take it?

[PurpleNails Administrator in reply to Littlecaterpillar]

Make sure you obtain a copy of the results and ensure the correct antibody testing have been completed and are positive to confirm Graves.

Ive read that PTU can be taken with or without food.

The important thing to do is to take the right dose of medication the same time/s everyday.

I was terrible at doing this, forgetting completely and I’m sure taking double on at least one occasion. In the end I downloaded an app on my phone which reminds me when it’s due & got a pill dispenser box. Especially useful if you have other medications & take supplements you want to space out.

Read through the patients leaflet carefully. By law it must be dispensed when you collect the medication.

There are common side affects such as nausea, aches, rashes which are temporary and can be managed and there are other serious rare side affects which you must be vigilant for. Jaundice and feeling very unwell for example.

Don’t be surprised if the pills are dispensed loosely in a generic bottle and not in a bister packet.

When my chemist does this I ask them to put the expired date on them as they always miss it off.

You may want to start a new post asking others of their personal experience taking PTU.

[Littlecaterpillar in reply to PurpleNails]

Thanks so much for your help!