Hi all - my blood tests have come back from blue horizon . They have stated that I am overactive, I’m on 150mg Levo I had RAI 25 years ago.
Dropped to 150 July 22 not felt same since. Gp wants me to drop to 125mg reluctant to do this.
Blue horizon indicate that I have high cortisol in my blood - I’m not or have ever been on steroids
All very odd.
please add actual results and ranges
Was test done early morning and last dose levothyroxine 24 hours before test
When were vitamin D, folate, ferritin and B12 last tested
what vitamin supplements are you currently taking
If you’re hypothyroid on replacement thyroid hormones you can’t be hyperthyroid
You could possibly be over medicated
You’re only over medicated if Ft3 is over range
Low TSH alone does NOT indicate over medicated
Dr comments from Blue Horizon are frequently inaccurate/incorrect
high cortisol is typical when UNDER Medicated or poor conversion of Ft4 to Ft3
Adrenals try to compensate for lack of thyroid hormones
When you add TSH, Ft4 and Ft3…..can comment on actual results
Copied from separate post to keep all replies together.
Here are my blood test results. No Levo in 24 hours prior to doing blood test. No vitamins, for 2 days. Usually take multivitamin and multi mineral, evening primrose, cod liver oil.
Test done 7am
Gbunny
FT4 slightly over range but produces a miserable 42.16% through range FT3. Looks like poor conversion of T4 to T3. Are all your key nutrients are optimal as follows:
Vit D: 100-150nmol/L
B12: top of range for Total B12, if Active B12 tested then 100 plus
Folate: at least half way through range
Ferritin: some experts say the optimal ferritin level for thyroid function is 90-110ug/L
If not then you should consider optimising them.
If they are optimal then you may benefit from the addition of T3 to a reduced amount of Levo.
I personally wouldn't rely on this cortisol result. The 24 hour cortisol/DHEA saliva test is said to be the better test. My cortisol is always over range when I do this test with Blue Horizon yet I have struggled to try and raise my overall cortisol level for years despite supplementing and frequent testing with Regenerus saliva test.
many thanks for your reply. Much appreciated.
Hey there again ;
I can't see any readings or ranges here and as you have had RAI thyroid ablation the chances of you being hyper are just silly - did you advise Blue Horizon of your medical history ?
The TSH in Graves patients does not always recover and when optimally medicated to be well, you will likely have a suppressed TSH if you didn't have one before hand.
This is the continual uphill struggle we face as it seems mainstream medical have a very limited understanding and once a Graves patient always a Graves patient as the Graves antibodies that once sat on our TSH receptors driving the TSH down and and revving up our thyroid hormones are still there - but now the thyroid has been burnt out in situ - there's nothing to " rev up " and the feedback loop broken, as the power source - the thyroid - has been disabled.
Dos that make any sense ?
You could be over medicated but need to see a Free T3 and FreeT4 from the same blood draw :
Barbara S Lougheed's book : - From Hyper to Hypo to Healing - breaking the TSH rule :and believe blogs as Tired Thyroid or maybe it's Thyroid Mom ?
Another lady with Graves who went through the same procedure is Elaine Moore - the most well respected and knowledgeable researcher on all aspects of Graves and when, feeling no resolve to her health issues started researching this poorly understood and badly treated AI disease some 20 odd years ago.
Books written by above two ladies are available through the Thyroid UK website - Library page - thyroiduk.org
Likely you have low vitamin levels
Next step is to test vitamin D, folate, ferritin and B12
Multivitamins NEVER recommended on here
Most contain iodine not recommended for anyone on levothyroxine.
Cheap poorly absorbed ingredients and at best waste of money
Test FIRST and only supplement with decent good quality separate vitamins
Usually vitamin D, vitamin B complex. Sometimes separate B12 and iron
FT4: 23.2 pmol/l (Range 12 - 22) 112.00%
FT3: 4.66 pmol/l (Range 3.1 - 6.8) 42.16%
Results show Ft4 is too high
Ft3 too low
Terrible conversion rate
pity you didn’t test vitamin levels with thyroid
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
come back with new post once you get vitamin results
The high cortisol is likely what is disrupting your thyroid for sure! It is my experience that very likely there are far fewer cases of an essential thyroid problem, but that when a thyroid has become disrupted its by something else out of wack. Healthcare doesn't do it but I think vitamin and mineral profiles would give us far better information for diagnosing health disruptions . Lab tests for specific organs only give us a piece of the puzzle and usually the most misleading. Mine is not a popular opinion. Lab profiles are expensive, so my next suggestion keep a log. Food, water and pill intake in short keep an Intake and Out put record and track how you feel, energy level. This might give you some insight as to just what is going on. Hope this helps you get a handle on your situation. Also recommend Mayo Clinic site as the most complete for drug information.
I have zero experience with Graves (decades of experience with Hashimotos). It seems odd to me that you are being treated with Levothyroxine - a drug used to treat LOW thyroid. I agree with other comments here on the cortisol - it will get better when the thyroid hormones are better controlled. I agree with the advice you were given to reduce / step down on the Levothyroxine. 150 mg even 125 mg seems WAY too much for someone already over producing thyroid hormone. (Is it possible to find another Dr.?). Not sure how long you have had to deal with Graves, (before menopause?). If so, it is highly likely that menopause / the fluctuation of progesterone and estrogen could be playing a bigger role than one might think.
Dr. Christianson is a naturopath endocrinologist and has some serious things to consider about Graves. drchristianson.com/blog/how...
While he offers tips on how Graves can be eased, he also insists that medical treatment must go hand in hand with getting Graves under control. (Levothyroxine is not mentioned anywhere as a treatment for Graves - either with Dr. C, or any of a half a dozen other sites I quickly scanned). A very small percentage of the research indicated that Graves sometimes resolved on its own (like 10 - 15% resolves on its own - many times after menopause). Here is a study from the US: ncbi.nlm.nih.gov/pmc/articl...
It can be very scary to have too much T3/T4 and a thyroid that is not functioning optimally. Conventional / Main stream medicine is slowly starting to rethink decades old (mis) understanding of what causes Graves / Hashimotos, therefore, how to treat either. I hope you can find a Dr. that has a better understanding of Graves. Again, it seems a medicine other than Levothyroxine is much more to be desired / will make you feel better. Armed with information, we can sometimes find a Dr. that will discuss options on treatment.
Please keep in touch on your progress. It is very doable to have a say in preferred treatment. Again, please come back and share with others when you find what works for you!
dtate2016 Gbunny isn't 'really' hyperthyroid / overactive anymore, she had RAI many years ago , so her thyroid probably doesn't function at all now .
The lab comment saying "this is a hyperthyroid (overactive thyroid) result" is just a general comment .. written with the assumption that there is no previous thyroid diagnosis / treatment.
It is followed by "If you are already taking thyroid medication , you may be taking to much" and this is the relevant bit for someone already taking Levo.
After RAI ,hypothyroidism follows .. the patient no longer has an 'overactive' thyroid .. or 'any' thyroid really , (it's effectively been destroyed) so true hyperthyroidism is no longer physically possible ........ they then need to take thyroid hormone replacement just the same as someone who has hashimoto's does .
~ If their dose becomes a bit too high for their needs eg. because their needs change ,then they end up with suppressed TSH and over range T4 because they are 'overmedicated '(not really Hyperthyroid) .
~ or if they are not converting T4 to T3 very well , they get results like Gbunny's T4 too high , but T3 lowish
Lab comments are not specific to the individual .. the person writing them usually has no information about the persons diagnosis / current treatment ... so people often get confused by what is written in postal blood test 'comments' .
Junior GP actually phoned me to discuss my angst about a further reduction in Levo to 125 and after half an hour of me explaining the symptoms and effects that reducing Levo is having on my well being - I finally realised that she was more concerned about covering her backside ! ….. we reached stalemate as I’m not reducing, she then tried to threaten me to see an Endocrinologist!! … let’s see what happens there. Thanks to the forum I have much more knowledge to be able to help fight my case 🤔
very similar thing happened to me .... on 150mcg for 15yrs , then couple of years after menopause i did become actually overmedicated with symptoms of it.. (fine tremor in fingers / jumpy / bladder problems / over frequent bowel mvts / significant weight loss / nasty pain in kidney area )
~My fT4 was a bit over range at that time ( 119% ) ...but it had been higher than that before with no issues eg 126% and 134%. However my 'usual' TSH of 0.05 ish had fallen a bit to 0.018
Anyway reducing to 125mcg did resolve those symptoms totally ... but also i was never as good after that as i was previously ..... generally slower.
Then 3 yrs after that, i was doing 'ok' life was 'good enough' (i was managing part time work with no issues some quite physical gardening , long walks/ bike rides etc with no problems apart from 'crashing' for 24hours after overdoing it, but i have always had a problem with this ever since my hypo diagnosis.)
.. but my annual fT4 was found to be WAY over range (200%) but this time as well as not having any symptoms of overmedication, my TSH had not fallen, it was still 0.041
Similar issues to yours then happened ~ie dose reduced by 12.5mcg to 112.5mcg .. really big problems for the first 5 weeks ~ felt lousy and couldn't manage to keep up with work/ garden .... , after 5 weeks i very gradually started to feel bit better again , but at the repeat blood test @ 3 months the FT4 had actually gone even higher (242%) .. GP thought i'd increased dose instead of lowering .. (i had not.. and blood test condition were the same eg least dose Levo 24hrs) . TSH had risen a bit to 0.097
He said "reduce the dose to 100mcg" i said "i really don't want to do that, at least not straight away .. ive only just started to get my act together again ~ my house is a mess , i'm behind with my work and my finances , and i need to sort these thing out" .
We had a bit of a shouting match about it . He said " the dose is 100, you'll die"
I did decide to try 100mcg a few months later. (because his concern had scared me a bit ,, and i was concerned about getting AF as it increases the risk of stroke , and my aunt who had always been on fairly large dose of Levo (200mcg) had previously had a stroke and was now paralysed on one side)
trying 100mcg was disastrous ... 6 weeks of hell. by the time i got bloods done after 6 weeks i'd been totally constipated for 3 weeks needing laxatives, my digestive system had gone to sleep , food just sat in my stomach like a stone, my cognitive function was so bad and i was so slow that i had difficulty crossing the road safely. Driving was out of the question.
i went to the blood test and told the phlebotomist i would be putting it back up to 112.5mcg myself immediately after the blood test, regardless of the result. She obviously informed GP of this comment and he rang at 9 am the next morning.. i discussed this paper with him which shows no increased risks unless TSH goes below 0.04 academic.oup.com/jcem/artic...
He said "we worry about your heart" ( as far as anyone knows there is nothing wrong with my heart , and never has been , and he 's not had a stethascope anywhere near it)
He eventually gave up arguing ,,and said "i don't want to make you unwell, so what dose do you want to take ?" we agreed 112.5 for now. He's written "she understands the risks" on my notes to cover his back in case i drop dead.
The results of that blood test on 100mcg were that fT4 was still way over range , but lower than it had been (181%) and the TSH had risen to 0.5 ...still a tad below range [0.57-3.6] but higher than my 'usual'.
7 months later we tested again on 112.5mcg ,, and despite the increase in dose ,the fT4 had lowered a bit more (142%) and the TSH was significantly higher 1.94 .. but i was feeling reasonably ok again. So i stayed that dose and actually i've been ok for th last couple of years on that dose ,.. i did tweak it up to 125mcg as an experiment for a few months last summer , i was more active and felt good ( ... until i didn't feel ok anymore by late october ...,so i have experimented with putting it back to 112.5mcg for the winter)
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Not sure most of that saga is any direct help to you ,but i've stuck it here anyway.... The point being ~ my fT4 going over range didn't seem to relate to how well i was , or to whether i was 'truly' overmedicated or not . It went up and then came down by itself over several months, regardless of what we did with my dose.......and lowering the dose 'too far' to try to control it (when i had previously been feeling ok despite the high fT4) caused me significant problems and messed up my work and financial life (and meant my push bike was used as a coat rack for over a year .. which did no good for my overall health ~or my heart !)
I have autoimmune hypo.. not RAI , so my thyroid could have been involved in my High fT4 shenanigins .. not so likely to be the cause for your high fT4 , so i dunno what's going on with your fT4 going high in the last couple of years ... but If they are threatening to send to to an Endo , i'd go and see what they say .. if you choose the 'right' endo they may give you a trial of combination therapy with T4 +T3
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Useful links.
Please See my Reply to this post (3rd reply down ): healthunlocked.com/thyroidu... (feeling-fine-but-tsh-is-low) ~ for a list of useful posts discussing Low TSH / Risk vs Quality of life
~ALSO includes link to post discussing recent research suggesting high fT4 is best avoided IF POSSIBLE, (T4 has some interaction with cancer cell 'proliferation' and associations with some but not all types of cancer .i think was the jist of it ... bit new , and still largely theoretical, but worth knowing about so you can take it into consideration)
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Paper showing long term supressed TSH had no significant effect on bone loss: healthunlocked.com/thyroidu...
Thyriod blood test results
Blood test results (again)
High Thyroglobulin blood results 
Blood results. Comments welcome!
