RAI - Hashimotos?: I was diagnosed with... - Thyroid UK

Thyroid UK

139,476 members163,719 posts

RAI - Hashimotos?

AddiFeelsCack profile image
11 Replies

I was diagnosed with overactive thyroid in 1990, after a hectic time had Radio-active Iodine in 1993 and 2 months later I was underactive.

I know there is nothing special about this, but over the years my Levo was increased as expected until 9 years ago and then my GP started to reduce, TSH was increasing, but then I started to get gut problems, I started getting skins conditions, I got treated for Eczema in my ears and told I had Celiac, then in 2013 had gallbladder removed.

Now here is my question...

Could I have Hashimotos?

I seem to be in a cycle of immune issues, I got told by my Endo that I could have HAD Hashi's or Graves before RAI, but as I no longer have a thyroid I would not. To me that does not equate, as regardless of radio-active treatment, auto-immune would not just stop, Surely it would be in my interest to check?

Please advise me, I am battling with this and sometimes I loose all my oomph, and then depressed, to start the cycle again.

Written by
AddiFeelsCack profile image
AddiFeelsCack
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Clutter profile image
Clutter

Addi,

Can you post your recent thyroid results with the lab ref ranges (the figures in brackets after your results). I'm concerned that your GP was reducing your dose although your TSH was rising. TSH rises when the body is short of T3. Levothyroxine should be increased when TSH rises.

My understanding is that without a thyroid to attack Hashi becomes dormant unlike Graves which can attack other organs when thyroid is ablated.

Having one autoimmune disease does predispose one to others and there is a school of thought which thinks that all autoimmune disease starts in the gut which is why dietary changes can improve and reduce flare ups in autoimmune diseases.

You can order private antibody tests if you want to check your status thyroiduk.org.uk/tuk/testin...

AddiFeelsCack profile image
AddiFeelsCack in reply to Clutter

Results 23.6.14

"Serum free T3 leveI" 5.3 pmol/L (2.6 - 5.1)

"Serum free T4 1evel" 13.9 pmoJ-/L (9.0 - 22.0)

'

"serum TSH levels' O. 01 nu/L (0 .35 - 5. 00)

"low"

Will be filed as: 0.01 mU/L

Adequate Thyroxine replacement

results 28.3.14

2810312014 Thyroid peroxidase antibody level = 3.9 kU/L Original Result: 3.9 ku/L (0.0 - 5.6)

2810312014 Serum oestradiol level = 57 pmol/L

2810312014 Serum LH level = 4.5 lU/L F: Follicular Mid Cycle Luteal Post Men

LH U/L 1-13 8-75 1-15 25-100

FSH U/L 1-10 5-35 1-6 25-100

OES pmol/L 40-600 530-1930 120-720 <140Original Result: 4.5 iu/L 0

2810312014 Serum FSH level = 24 lU/L Original Result: 24 iu/L 0

2810312014 Serum vitamin D = 39 nmol/L Low Please note new recommended ranges as of 24th February 2014

<20 nmol/L: severe deficiency

20-50 nmol/L: insufficiency

50-200 nmol/L: acceptable

>200 nmol/L: possible toxicity if sustained

2810312014 Serum globulin = 3'1 g/L

2810312014 Serum total protein = 68 g/L

2810312014 Serum inorganic phosphate = 1.01 mmol/L

2810312014 Corrected serum calcium level = 2.22 mmol/L

2810312014 Blood calcium level = 2.2 mmol/L

2810312014 Serum alkaline phosphatase = 72 UIL Original Result: 72 u/L (30 - 130)

2810312014 Serum albumin = 37 glL

2BlO3l2O14 Serum free T4 level = 18.6 pmol/L Adequate Thyroxine replacement

2810312014 Serum free triiodothyronine level = 3.9 pmol/L

2810312014 Serum TSH level = 0.22 mU/L Low Original Result: 0.22 mu/L (0.35 - 5.00)

Results 10.01.14

1010112014 Serum free T4 level = '1 7.6 pmol/L Adequate Thyroxine replacement

1010112014 Serum TSH level = 0.2 mU/L Low Original Result: 0.20 mu/L (0.35 - 5.00)

Results 21.6.13

2110612013 Serum free T4 level = 20 pmol/L High Free T4, suppressed TSH, suggest reduced Thyroxine dose

2110612013 Serum TSH level = 0.01 mU/L Low Original Result: 0.01mu/L (0.35 - 5.00)

Results 6.9.13

06/09/201 3 Serum free T4 level = 16.4 pmol/L Adequate Thyroxine replacement

06/09/2013 Serum TSH level = 0.'13 mU/L Low Original Result: 0.13 mu/L (0.35 - 5.00)

Results

1210412013 Serum free T4 level = 28.1 pmol/L High TSH suppressed and T4 raised. Suggest review thyroxine dose.

1210412013 Serum TSH level = 0.01 mU/L Low Original Result: 0.01mu/L (0.35 - 5.00)

These are what I have for the last year, but nearly all of these TSH are low, and the ones for the previous year were also. I don't seem to be able to find any previous.

Clutter profile image
Clutter in reply to AddiFeelsCack

Addi, Your TSH set point can remain low for years after being hyperthyroid and sometimes never recovers. Your FT4 is currently low because your FT3 is high so there is no requirement to store T4 for conversion to T3. I would hazard that you are slightly overreplaced with your FT3 above range. If you have any hyper symptoms you might be more comfortable if you reduce your dose very slightly. Are you taking T4+T3 or NDT?

Were you prescribed D3 for your vitD deficiency?

AddiFeelsCack profile image
AddiFeelsCack in reply to Clutter

I only started taking T3 with my Levo in May 2014, my T4 has been upper range for what seems forever, I have been requesting Free T3 bloods every time, but only had done a couple of times and on the last one it was high - due I am sure to my taking T3. I had asked to do Totals to see how the ratio was for my Triodothyronine, but found out GP could not, but she has been so helpful, she went ahead in getting me set up to see an Endocrinologist with the intentions of the tests she could not put through being done, unfortunately he is not to my liking, (have only seen him once at the beginning of July, and go to see him again in September as he wanted to see how I go on the T3), as he put down a lot of things I was asking about, he even managed to use the term "hippy dippy" when I brought in my DAT's as I have been really fatigued for the past 8 months, I have pulled away from social interaction as I get so angry/irritable, I have become more aware, (squinting in discomfort) of light, along with a multitude of other things going on, and my GP agreed that it could be adrenal, but again was unable to do 24hr saliva test.

Yes I was told to get D3, as well as folate and B12, the GP only prescribed Ferrous Fumarate...

These are ALL of what I have added into my supplement regime:

Thyroxine REDUCED 150mcg -- 28th June 2013

Atorvastatin 40mg -- starter 17th October 2013 -- STOPPED 28th May 2014

Vit D 2000iu -- 13th April 2014 - 2 capsules PD

Iron and vitamins B & C -- 19th April 2014 -- stopped when started higher dose in May

Selenium 200mcg -- 22nd April 2014

Iodine (Himalayan pink salt) 1/2 tsp [approx 3g] -- 7th May 2014

TiROMEL 25mcg -- 29th May 2014

Ferrous Fumarate (iron) 210mg 1 tab 3 times pd -- 30th May 2014

Vitamin C 100mg -- 30th May 2014 (3 x 4 tablets) - taken with Iron

Methylcobalamin 1000mcg -- 1st June 2014

Tyrosine 750mg -- 1st June 2014

Folic acid 400ug (mcg) -- 1st June 2014 (doubled from 2nd June) - STOPPED 16th June

Zinc (Gluconate) 30mg -- 13th June 2014

Potassium Gluconate 550mg -- 15th June 2014

Chelated Magnesium citrate 400mg -- 15th June 2014

Vitamin A 7500iu -- 15th June 2014

Folate 800mcg -- 17th June 2014

Acidophilus Bacteria Mixture 40mg -- 21st June 2014

Vitamin K2 100mcg -- 23rd June 2014

Niacinamide (Vit B3) 500mg -- 23rd June 2014

Holy Basil Leaf 400mg (2 x 2pd) -- 9th July 2014

Mega Benfotiamine (B1) 250mg -- 9th July 2014

I do not know if they all help, I know my folate, iron, B12 are slowly rising, so at least they are being beneficial, but I still worry about absorption, and I cannot stop and wonder about whether my T3 is where it is meant to be and not just running around unbound like me in life...lol

(poor attempt at humour, feeling anxious!)

Also, still concerned about my adrenals, namely cortisol levels, I look at my WBC and they seem to get lower each time, I know it is not indicative all by itself, but with other symptoms, my DAT's, and this as the only thing to look at, it seems I may have a cortisol issue, the endo said that the saliva test was too expensive, (I know it is not and will be getting private kit), he also said in his opinion urine test was better suited and more reliable. I am not a doctor, but I can research and do, and everything says that the saliva test is the best option.

I am sorry to rant on, I am glad I am typing this as I am crying and would probably have shut up if in person, so many times I just feel it is pointless to even ask.

Clutter profile image
Clutter

Addi, your symptoms of tiredness, anxiety, irritability and tearfulness may be due to overmedication. Was your T4 reduced before you added in T3? You are taking the equivalent of 225mcg T4. FT3 is good in the top 75% of range but not over range. I think you need to decrease your T4 to 125mcg and halve your T3 to 12.5mcg for a few days to let your FT3 drop into range.

thyroid.about.com/od/thyroi...

I assume DAT is temperature readings? Modern doctors probably aren't taught about basal temperature and metabolism so don't be upset by his ignorance and attitude.

Take 500mg-1,000mg of vit D with each dose of ferrous fumarate to aid absorption.

I don't understand cortisol and adrenals so can't advise.

AddiFeelsCack profile image
AddiFeelsCack in reply to Clutter

Clutter,

Thank you so much for you advice, I do not understand where you got " You are taking the equivalent of 225mcg T4." ??

As I am on 150 mcg thyroxine, should I reduce to 75mcg? and then T3 to 12.5 mcg?

I take 2 x 2000mg Vit D seperate to my iron, and 400mg Vit C with each dose of Ferrous fumerate, so should I change this?

And yes, DAT is Daily Average Temperature, of which mine is all over the place, I understand this is one of the things only recently being monitored, I hope I am not jumping the gun, I just want to try and get to a "normal" state of mind, loose some weight and generally feel more like the person I was 30 years ago, I know I cannot be that person anymore, but I think I should be able to improve if I do all I can and get GP/Endo that helps... Oh and of course, valuable help from kind people such as yourself.

=]

Clutter profile image
Clutter in reply to AddiFeelsCack

Addi, T3 is 3 x stronger than T4 so 25mcg T3 is equivalent to 75mcg T4 plus 150mcg T4 = 225mcg equivalence.

You should reduce T4 to 125mcg and temporarily reduce your T3 to 12.5mcg for a few days to allow your FT3 to drop and then increase your T3 to 25mcg if you need it. FT3 wants to be towards the top of the range but not over.

Your supplement regime is fine and doesn't need changing.

AddiFeelsCack profile image
AddiFeelsCack in reply to Clutter

Clutter,

OK, thank you for clearing that up, I knew the strength of T3 but did not realise I should be adding it in T4 relation. I will drop dosage tomorrow and keep at that level and hopefully get a sense of improvemnet.

I will post on here next week and let you know how it goes,thank you so much for your help.

Addi

Clutter profile image
Clutter in reply to AddiFeelsCack

You're welcome, Addi.

AddiFeelsCack profile image
AddiFeelsCack in reply to Clutter

Well hello Clutter,

It is now nearly 3 weeks since we spoke, I did as you suggested and have to say felt an improvement, but due to some extreme stress in the family at the moment, things seem to be falling apart.

I seem to tolerate 125mcg T4, and 25mcg T3 quite well, but as I have just had the worst 2 weeks of my life, cannot honestly say whether my bodily reactions are due to meds or the stress? I go for a full blood panel next week and am doing the 24 hr urine collection for next week as well, so hopefully can get a clearer idea when the results are in.

Just another quick question, how much can extreme stress skew results? I know it is relevant to say each person reacts differently under stress and it would be an individuals level of more or less to get to a reference point, but let me just reiterate, I have been in total despair, not an exaggeration, my 2 eldest daughters both stopped eating and drinking, one is now home and the other has gone on to a eating disorder unit, but by no means resolved and now a long road of recovery for both of them. So, I cannot help but wonder if my weight loss, anxiety, tiredness is symptomatic predominantly to that?

Clutter profile image
Clutter in reply to AddiFeelsCack

Addi, I'm glad the slight reduction helped. I don't know whether or not stress affects thyroid bloods but don't forget you shouldn't take your thyroid meds until after your blood draw.

I'm sorry to hear how stressed you are coping with your daughters' eating disorders. Perhaps you can you have family counselling to help you care for them and manage your stress at the same time.

Not what you're looking for?

You may also like...

RAI

5 most per day. Had appointment with endo Thurs 11th. He advised radio active iodine. I am at a...

Graves & TED - RAI or Thyroidectomy

originally told I couldn't have RAI because of my TED but as it is now 'inactive' its ok? I would...

Gluten Free after RAI

how long did it take? I have Graves treated with RAI in 2008, I have seen GF recommended a lot, I...

Hyperthyroid relapse - considering RAI

else had had this treatment who works in healthcare and could give me an idea of how long you would...

Worried about past RAI treatment

diagnosed with Graves’ disease in 2003 and had Radio iodine treatment in 2005. I’ve been on...