New here and just wanted a little advice as it isn't forthcoming from my consultant. Treatment following iodine treatment.

[FMHC23]

After years of trying unsuccessfully to sort my hyperthyroidism I had my iodine treatment at the end of June. I waited ages to see my consultant but finally saw him in Sept when he requested a blood test (results attached) I then had a phone call to say the results showed the treatment had worked and was sent a prescription for Levothyroxine 100mcg which I've been taking for just under 3wks. Is it normal to feel so awful....I've had horrendous headaches, muscle aches and pains in my arms, legs and jaw, extreme exhaustion and just generally feeling pretty low and emotional. I expected some side effects but nothing like this. As a side note this forum has been sooo helpful and I hope I've done this question correctly.

[SeasideSusie Remembering]

FMHC23

Do you mean you had radioactive iodine treatment to kill your thyroid?

You are obviously very early in your treatment for hypothyroidism and there is a long way to go.

What brand of Levothyroxine are you taking?

[FMHC23 in reply to SeasideSusie]

Thank you so much for replying. I believe it's Northstar?! I think my frustration comes from my consultant being very flippant and saying 'you'll have the radioactive iodine treatment, possibly become underactive and will then need some medication' All sounded pretty simple but on finding this incredibly informative site I've realised it's not. I've also felt like a raving hypochondriac as I'd no idea I'd feel so rubbish...I'm hoping that's normal? Feel pretty deflated at reading 'there's a long way to go' but hey ho appreciate the truth

[SeasideSusie Remembering in reply to FMHC23]

FMHC23

I was never hypER so I've not had RAI treatment, just bog standard hypOthyroidism without knowing the cause. I was never told my results (this was back in 1975 when I was diagnosed).

You currently have a TSH of 49.60 and an FT4 of 6.4 (6.3-14). By a "long way to go" I mean to get your levels to where most people on Levo need them to feel optimally medicated. Generally this is with a TSH of 1 or below with FT4 and FT3 in the upper part of their reference ranges, say maybe 70-75% through range.

It can take months to get optimally medicated but you have been put on a highish starter dose of 100mcg so if this suits you then maybe you'll see improvement quite quickly. Not everyone does well with starting on such a high dose, but I think (although not certain) that your starter dose could be pretty standard after RAI treatment.

Hopefully someone who has gone through the same will come along and share their experience which you might find a bit more encouraging.

A lot of your symptoms may be down to your thyroid levels, but it is important to have optimal nutrient levels for thyroid hormone to work properly. Low nutrient levels can cause symptoms, some similar to symptoms of hypothyroidism. If not already done, it would be worth asking for Vit D, B12, Folate and Ferritin to be tested. If you get them done do come back and post the results and ranges on the forum, also add units of measurement for Vit D and B12. We can then see if you need to improve any of these levels.

Ideally you will be retested 6-8 weeks after starting Levo so do follow our usual advice for thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw [if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary.] This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

Whenever you have a dose change, retesting should be done 6-8 weeks later to check your levels.

Northstar tablets are made by Accord in their 50mcg and 100mcg doses (Northstar 25mcg dose is made by Teva) and Accord/Northstar and Almus (made by Accord for Boots) are all the same in the 50/100mcg doses and seem to be fairly well tolerated by members.

Teva brand (and Northstar 25mcg made by Teva) does cause adverse reaction in a lot of members although some do find it suits them well. Just something to look out for in the future.

Once you know you tolerate a brand well it's best to stick to it rather than let the pharmacy give you a different brand each time.

[FMHC23 in reply to SeasideSusie]

Thank you so much for your detailed reply, it is so helpful and really is much appreciated. Ahh I understand what you mean by long way to go now was in terms of sorting out the levels...but guess realistically it could be some time to get things levelled out. Again, appreciate your reply. Thank you

[Twdibwd in reply to SeasideSusie]

I found this account.very helpful and gives an explanation of why TSH levels I’ve had, have varied. Down to timing of bloods and whether I’ve had breakfast. I normally take my Levo very early in the morning with water and have food and tea about 8 am. I have never been given any specific instructions from my GP or Phlebotomist before bloods. Thank you I will take note.

[SeasideSusie Remembering in reply to Twdibwd]

I have never been given any specific instructions from my GP or Phlebotomist before bloods.

That's because they know so little about anything to do with the thyroid. Ask them and they'll say you don't need do anything special in preparation for a thyroid test, they don't even realise taking your Levo before the test will produce a peak in your FT4 level. There are a few doctors/endos who do tell their patients all this, but very, very few.

To be able to compare results each time, be consistent and always do your tests exactly the same way, and for best possible measure of the normal amount of circulating hormone we advise following those steps.

[bantam12]

I had RAI around 20 years ago, went hypo within 4 weeks with TSH of 60+. I don't really remember much about it other than I was very tired. Personally being hypo is way easier than hyper and once levels come down things should get better, just done expect it to happen to soon !

[FMHC23 in reply to bantam12]

Thank you for taking the time to reply. As you say perhaps I need to manage my expectations and accept it'll take time. Thanks again

[pennyannie]

Hello FMHC and welcome to the forum :

Thank you for reminding me, and yes, I too found flippancy in the announcement at my very first endo appointment, that I was to have RAI the following year, and just handed a leaflet that I realised many years later wasn't fit for purpose.

Primary hypothyroidism caused by RAI is more challenging to treat.

RAI is known to trash vitamins and minerals.

No thyroid hormone replacement works well until your core strength is strong and solid, and we especially need to maintain ferritin, folate, B12 and vitamin D. at optimal levels.

I was immediately prescribed 100 mcg T4 daily and discharged out into primary care. and I'm upset that you have been left unmedicated and not " picked up " sooner.

I read the dose of RAI administered is not as " exacting " as you might think, with many people being told they may become " a little hypo " which again, is a little short on the truth, as RAI slowly burns out the gland in situ slowly disabling and destroying its functionality.

It is essential that you are not dosed on just a TSH blood test, but in primary care this maybe all you are likely to get actioned.

Your feedback loop is now broken as your HPT axis - the Hypothalamus-Pituitary-Thyroid feedback loop is broken, as missing the" T " thyroid so a TSH test will not be a true reading of how effective your thyroid hormone replacement is working and converting into T3 for you.

It is essential that you are dosed and monitored on your T3 and T4 blood test results and we generally feel at our best when our T4 is in the top quadrant of the range as this should, in theory, convert to a higher level of T3 at around a 1/4 ratio T3/T4.

T4 is inert, and needs to be converted by your body into T3 which is the active hormone that the body runs on and read T3 is about 4 times more powerful than T4 with the average person needing to convert and utilise around 50 T3 daily, just to function.

It is T3 that gives you your systems, too low a level of T3 and you have the disabling symptoms of hypothyroidism just as too high a level of T3 and you may experience symptoms of overmedication and " hyper " type symptoms - some symptoms can be experienced when either hypo or hyper, t ca get confusing, and there is a list on the Thyroid UK website of both sets of symptoms you may experience.

A fully functioning working thyroid would be supporting you daily 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 only, some people find T4 seems to stop being as effective as it once was and need a little T3 prescribe alongside T4 - a T3/T4 combo, some people can't tolerate T4 and take T3 only, and some people prefer to take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down in tablets referred to as grains.

It's early days for you, and I'm sorry if I've gone on a bit and you've now information overload. There is a lot to read and understand and if suffering with that " brain fog " it can be daunting, but just go on step at a time, and like a jigsaw puzzle it starts to fall into place once you get some corners out.

I think at 8 weeks on 100 T4 it would in your best interests to get a full thyroid blood panel run to include your TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D,

If your doctor can't do this for you, there are private companies, listed on the Thyroid UK website who can, and even arrange a nurse to come to your house and take the blood draw for you.

Make an early morning appointment, fast overnight just taking on water, and take your T4 medication after the blood draw. If taking any supplements refrain from these for around a week prior so we can see what your body is holding on to.

If you don't know of Elaine Moore you might to dip into her Graves Disease Foundation website, as Graves is an auto immune disease and as such, is for life, and tends to be triggered by stress and anxiety.

I was fine on T4 for around 8 years and didn't start my learning curve until around 10 years post my RAI thyroid ablation, but I'm now my own best advocate and am so much better, thanks in the most part to a couple of books and this amazing forum.

[FMHC23 in reply to pennyannie]

Wow that's a lot of information, Thank you! My foggy, chaotic brain will take a little time to get itself around that but thank you so much for your help and information, really is appreciated. One thing I have garnered from this site is that the onus is upon oneself to get as much information as possible. I'll certainly take a look at Graves Disease Foundation website, I assumed that my Graves would go after my RAI treatment?

[pennyannie in reply to FMHC23]

Well I think that is a common misconception.

The thyroid is the victim in all this and not the cause,

Graves is an auto immune disease and the cause is your immune system mistakenly attacking your body.

Once your thyroid is removed you will not suffer the hyper symptoms you once had, and hopefully when optimally medicated on thyroid hormone replacement, you will not experience the equally disabling symptoms of hypothyroidism.

Mainstream medical believe they can treat hypothyroidism more easily than they can hyperthyroidism.

I think it's all a question of degree and can only speak from my own situation, but if I had been given the option of long term AT medication that would have been my choice, as I was more well on the Carbimazole than I have been since RAI thyroid ablation.

There are forum members who have been on AT medication for very many years and I just feel it the most sensible option as we are looking at an AI disease, which is for life, and is said to be triggered by life stress and anxiety, which sadly, we are likely to experience throughout life.

That is where Elaine Moore's research came into it's own for me, as I needed to find my own " triggers " and work on my own self and situation, and have become very much like a Humpty Dumpty and have tried to put myself back together again.

[PurpleNails Administrator]

You have had lots of good advice already but just wanted to reassure you that you are not a hypochondriac & it’s wrong doctors have made you think you are.

You had a treatment but doctors haven’t fully prepared you or seem to have monitored you entirely appropriately. Once you had hypo symptoms you should have been tested started on replacement hormone.

There’s a lot of information to take in. Once you are more armed with knowledge you can learn to track your own result and advocate for yourself.