Hi,I'm a 49 year old male weighing approx 90 kilos.
I have developed hypothyroidism post radioactive iodine treatment (Feb 24th).Unfortunately I only have some basic numbers re blood tests.
I was started on 50mcg of Levothyroxine on 14th April after blood test showed TSH at 19.5 with free T4 at 13.
After feeling very tired and bloated the first week,the next week I was completely wired and unable to sleep.I was also struggling mentally.
So i used the blood form that was meant for 6/8 weeks down the line and went for another blood test on 28th April which showed TSH at 23,free T4 at 16 and free T3 at 4.1.
The NHS endo upped my dose to 75mcg on seeing these results which is what I'm still on currently.
I'm still alternating from feeling tired one week to feeling wired the next which the Endo has said is due to my body finding it difficult to extreme level of metabolism(as I had overactive thyroid pre radioactive treatment and under active now).Does this seem likely?
Since upping dosage I've had diarrhoea every day and 4/5 weeks ago some discomfort swallowing/feeling of lump in throat.
Ihave felt better mentally in last 4 weeks since being prescribed beta blockers by GP.
A blood form is being sent from hospital for me to get latest results and Endo will ring me with results.
Is there anything obvious that I should ask/mention to him?
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Robbo1972
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What is the range of FT4 & FT3. ranges vary between labs, can’t interpret accurately without test range.
What was the cause of your hyper? Were you offered other treatment.
When on thyroid replacement most feel well with TSH around 1 or lower part of range. although the TSH is not reliable. Most importantly the FT4 & FT3 often need to be in upper part of range.
You have T4 replacement but for it to work well and convert to T3 your nutrients need to good. In range is acceptable for doctor but you need optimal.
Being hyper (or hypo) and having RAI can really deplete or “trash” nutrients. Have you had folate, ferritin, B12 and Vitamin D tested as doctors don’t automatically test.
50mcg a standard starter dose it’s usual to increase in 25mcg daily steps, and retest every 6 weeks.
What time to you take levo, do you take with water only away for other medication & supplements?
Which beta blocker have you been given? Some such as propranolol can impact thyroid.
When you arrange blood tests arrange as early as possible and fast overnight. Delay Levo dose until after draw. Avoid supplements with biotin week before test, as biotin can interfere with test and skew results. This shows daily TSH at highest & lowest FT4 and will give consistent result to compare progress.
Originally had overactive thyroid 5 years ago but all symptoms were cleared up by carbimazole.
I was fit and healthy until taking 2nd dose of covid vaccine last July,not felt well since.Again prescribed carbimazole and although blood tests showed the medication was working,I still had tremors and was really struggling mentally.I agreed to radioactive iodine to hopefully put an end to my problems.
I think the FT4 range is 12-23,unfortunately don't know the FT3 one.
Definitely remember B12 being tested but unsure of others.
Yes I take the Levo first thing in the morning with water only and then dont drink or eat for an hour.
I shall delay my Levo before my next test as not done that previously.
Propanolol reduces conversion of T4 to T3, so that might have something to do with it. Perhaps your doctor can change it to another Beta Blocker - there are plenty of them.
Nothing specific. But, having lower T3 due to poor conversion will make you feel worse. Maybe I misread your post and you don't have many symptoms, but you might in the future if your conversion is compromised by propanolol.
Point noted and appreciated re propanolol,will speak to gp.I've only been taking it for 4 weeks and discomfort when swallowing and feeling of lump in throat is only new symptom since then.
If that was the right range it would be on low side.
FT4: 16 pmol/l (Range 12 - 23) 36.36% through range.
I suspect the FT3 is very low by most ranges and FT3 is often lower in % comparison to FT4. So it may be for examples be at around 15% of range.
Carbimazole usually works well at stabilising levels but if thyroid levels aren’t monitored carefully and doses adjusted appropriately you can remain too high or become hypothyroid. So that may have be why you felt unwell this time.
By the sound of it, having had overactive thyroid before which resolved and then becoming hyper again - you have Graves’ disease. This can be confirmed by correct antibody testing but doctors don’t always establish reason for hyper. The treatment RAI reduces the thyroid & the ability to become hyper but you still have Graves. The immune system would still be stimulating the thyroid it’s just that the victim (the thyroid) has been taken out of the equation. It’s possible the thyroid still has a small percentage of function and this can low mean fluctuations in levels.
Doctors view hypothyroid more straightforward & safer to treat than hyper so trade hyper for hypo. Now you are under active you need the right levels of replacement. It will take a bit of time, but you will get there.
As others say propranolol can lower FT3 conversion from FT4. This can cause it to worsen over time. Propranolol is also known to reduces magnesium levels. I take a high dose powdered citrate magnesium at night which helps sleep and cured a lower eyelid twitch id had long term.
An alternative beta blocker might be better. Do not stop propranolol abruptly. Specialist told me to stop a 3 x 40mg daily dose completely and made me Ill with migraines. GP put me back on the pm and it’s taken many months to reduce down. I seem sensitive to the last 20mg which I’ve been “stuck” on long term.
Keep note of new / changing symptoms, medications & supplements to its easy to lose track you where you are with symptoms and changes to doses ect.
Always obtain your results to track where you are. We are legally entitled to view our own blood test results, always obtain copies online or printed. (Never verbal or hand scribbled).
If specialist / GP is unable to test everything required. There are private options for thyroid blood testing. A number of companies offer tests from TSH, FT4 & FT3. To sets including antibodies & key nutrients. t’s can all be arranged via post and sample by finger prick at home.
This link lists companies - (discount codes available for some)
Finger prick samples are tested at approve labs. Some labs are used by NHS and many of us find them reliable & accurate. Sometimes the accompanying doctors’ advice is a standard “one size fit all” and isn’t accurate or takes into account all factors. It can also add a day or two for doctors to view and add comments. If I were of order test again I’d tick for “no” for comments. Then the results are available to view online as soon as possible.
You can find better advice on this forum.
Some find it extremely hard to obtain finger prick sample or the sample is Haemolysed and a replacement has to be reattempted.
Lots of us manage fine, being well prepared eg hydrated, warm, some exercising it will work very well. More convenient than a blood draw as it can be done in your own home.
Levothyroixine is synthetic T4. It’s converted in your system. So you need enough T4 for your system to convert to FT3.
This is usually balanced in those with healthy thyroid but once having hyper / Graves and an intervention such as RAI is can become more difficult to convert.
The first step it to ensure nutrients are optimal & then FT4 is in top part of range. This will likely ensure FT3 is at adequate levels. The Majority manage well.
A minority do find FT3 remains low despite good FT4 and nutrients, lots seek help on here. Hopefully that won’t be you.
If low conversion becomes a persistent issue you have a case for synthetic T3 Liothyronine. However the criteria is very restricted by NHS and it is never routinely prescribed. Most endocrinologists say they are unable to prescribe it. Doctors are taught FT3 isn’t as important as FT4 - even though its known FT3 is the more powerful & active hormone. FT3 testing is also limited eg if TSH & FT4 is in range lab automatically cancel the test.
Some pay privately for specialist & prescription or source Natural Desiccated Thyroid (NDT). porcine or bovine thyroid (gland) processed and containing T4 & T3. This was used before levothyroxine.
Becoming underactive after treatment is not unusual
Expect to need further increases of levo after your 6/8 week tests... until you reach your therapeutic dose.
Testing ( after 2 weeks) before your body had 6/8 weeks to begin to adjust to the replacement hormone was a waste of time I'm afraid....too soon to be helpful.
Here, we will all understand the impatience to make progress but sadly there is no quick fix (think headache/ paracetamol).....been there!
It will take time.
You need a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG
Post your next results ( to include reference ranges because different labs use different ref. ranges) and members will be able to comment then.
Explain any symptoms you have to your endo
Hopefully someone who can share personal experience of RA treatment will pop in.
I was told of the risk of my thyroid going underactive before the treatment so no complaints on that score.
It's only through reading posts on this forum that I realise that I was too hasty with the 2nd blood test!
It's the differing symptoms that's confusing me from one week to the next,hopefully the endo is right in saying it's my body struggling to adjust from being over to under and it will eventually settle.
You do need to give your body time to adjust and trying to rush it won’t help.I had RAI around 20 years ago and went very hypo within 4 weeks and it took many months to get the dose sorted and levels where they should be, no problems since.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi SlowDragon,Thanks for all the info,so much to take in!
I'm on Northstar Accord for all the 75,breaking one of the 50s in half(something I picked up from this forum).
The connection between gut and the thyroid is something I'd already come across in a book by Datis Kharrazian and I've found someone around an hour away who I could potentially see who studied under him,so that's always a possibility if things don't improve.
I'll speak to my endo re propranolol after blood test/results hopefully next week and then speak to gp about blood test for the other things.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Ok so you have Graves Disease and had RAI thyroid ablation to burn out your thyroid in situ :
RAI is a slow burn and if your antibodies are still raging or have been triggered by this substance this might account for your extremes in symptoms of both hyper and hypo, but ultimately you will become hypothyroid as the gland is disabled and fully destroyed by this toxic substance burning out the gland.
For any thyroid hormone replacement to work effectively you do need your core strength vitamins and minerals at good optimal levels and this is especially true of those of ferritin, folate, B12 and vitamin D .
RAI is known ' to trash ' vitamins and minerals so these bloods need to be run and your levels kept up at optimal, not just at anywhere in the NHS ranges.
T4 - Levothyroxine is a storage hormone, inert and needs to be converted by your body into T3 the active hormone which is said to be around 4times more powerful than T4 with the average person needing to convert / find around 50 T3 just to function.
The thyroid is a major gland, your body's engine, and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
We generally feel at our best when our T4 is up in, towards, the top quadrant of the range as this should in theory convert to a good level of T3 at around a 1/4 ratio T3/ T4 :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin, plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 - Levothyroxine only :
Some people find that at some point in time T4 seems to be not as effective as it once was and need to add a little T3 - Liothyronine, to replace that " lost " when they lost their thyroid :
Some people can't tolerate T4 and need to take T3 only :
Some people find that Natural Desiccated Thyroid suits them best as it contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
Currently in the UK T4 - Levothyroxine is all that your doctor can prescribed, though 20 odd years ago all the above treatment options would have been available on the NHS.
It's early days for you, I felt ok until around 8 years post RAI for Graves Disease and now I self medicate with NDT as I found no help nor undertanding through the NHS and am much improved.
You might not like these but you'll no doubt come across them in your research - which you must do as Graves is a poorly understood and badly treated AI disease and you will be best served being your own best advocate :
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