Diagnosed with Hashimoto’s 2019, it was a long and sickly road to diagnosis and treatment.
Levothyroxine only didn’t work for me and after a couple of not so great endo appointments I finally found a really good endocrinologist who agreed to add in liothyronine and commenced me on 20mcg of liothyronine (split into two doses) in addition to existing 100 mcg Levothyroxine).
It was this lovely endo who did an ultrasound which confirmed ‘withered’ thyroid gland and confirmed the Ords diagnosis.
I felt slightly under medicated on some occasions although tended to add in some vitamins after testing and generally felt so much better that I recommenced exercise and began to lose weight and build muscle and felt well for 2 whole years.
This no doubt has also been helped by a largely gluten free diet and taking vitamin supplements as per advice.
My TSH became suppressed following new combined therapy but neither endo or my GP at that time, were concerned and monitored for any other signs via T3 and T4.
Endo also uncovered low cortisol levels although ruled out Addison's following further tests.
When previously under medicated low iron levels have resulted in oral iron medication replacements annd have only occurred when under medicated and prior to starting T3 replacement.
Haven’t had low iron for some years although GP continued to monitor although no further incidents of low iron.
Sadly endo left and new locum consultant endo’ has only ever been interested in my consistently low TSH levels no matter how hard I have tried to educate him and he has threatened to remove T3 so many times that I have give up arguing.
He says he doesn’t angree with last consultant annd doesn’t think my symptoms relate to thyroid issue and that I need HRT (those dark ages keep knocking at my door sadly).
In January 24, I was finally ground down and in a vain attempt to keep hold of T3, I agreed to reduce levothyroxine by 25mcg per day leaving 75 mcg of levothyroxine and 20 mcg of liothyronine (split into two doses).
I became ill quite quickly and before the next appointment went back on my previous dose and within a few days felt well again.
When I told him in the next appointment he said to reduce it again as we need to raise TSH levels and so as advised I reduced to alternating 100 levo and then 75 levo.
The blood tests he was basing this on were last taken June 23.
Unsurprisingly I quickly became ill again only this time worse, in addition I developed new symptoms and recognised them as pointing to low iron.
I have now received my results from private testing (intravenous via a private GP) and have an appointment with my own GP (new practice) this afternoon.
Can I ask for some advice on latest blood test please, I have put ranges in brackets and blood test was taken as per pt to pt advice:
12/2/24:
TSH: 0.008 (0.350-5.500) (previously 0.002) Low
Free FT4: 17.30 (11.90-21.60)
Free FT3: 3.53 (3.10-6.80)
Anti-Tg: 33.9 (no lower range-115)
Anti-TPO: 17.4 (no lower range-34)
Iron: 5.6 (5.8-34.5) Low
Ferritin: 10.08 (9.999-120)
Transferrin Saturation: 0.7 % (15-50 %) Low
Folic Acid: 10.0 (3.8-26.8)
Vit B12: 675 (197-771)
Vit D: 144 (50-375)
I believe that in reducing my medication I have become further under active and this in turn has impacted on iron levels. I am off work sick for the first time in several years and have had some very worrying symptoms.
The low TSH level and low cortisol level puzzles me. The worst thing is the recent NICE guidance which says that when prescribing T3/ lio therapy the patient needs to have normal TSH levels so rather thinking that the nations lovely ICB’s will be delighted with this and that the good Doctor making a healthy woman very ill will be totally supported.
I continue to believe that low T3 and low T4 (and no doubt now Low iron) all continue to point to me being under medicated although this lovely low TSH has me beat.
I was hoping in reducing meds and raising TSH that it would then keep him happy and I could go on my merry way although no such luck.
Sorry for long post, replies and advice very welcome.
TIA
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Lassithi
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Apologies for the typos in my post and just to add-I returned to previous levothyroxine dose on Monday and within 24 hrs the worst of symptoms had improved.
Well, that was never going to work, was it. We see this time after time, people of combine T4/T3, suppressed TSH, brilliant (not) endo/GP says 'reduce the levo to bring up the TSH!' And it doesn't work. And it never will work while taking T3. But they never learn!!! They keep on doing the same thing, hoping for a different out-come and it never happens and they can't understand why. (Isn't that the definition of insanity?)
And the worst of it is, it doesn't matter. The TSH is low because you don't need it. The pituitary considers that you have enough thyroid hormone in the blood so stops trying to stimulate the thyroid - which is what TSH does. And they are supposed to be intelligent people but they can't work that out! It beats me, it really does.
Well, you can't cure stupid. You can't educate it, either. So, the choice is either find a new endo with at least one brain cell, or buy your own levo and put your dose back up yourself. Or, you just point-blank refuse to reduce your dose and tell him you know the supposed 'risks' of a low TSH, and accept them. You exonerate him from all responsibility. That might work.
Thank you and I could not agree more. I have thought about sourcing my own as I do know the dose that I feel well on but I still don’t think I could get past the annual blood test.
Is there any evidence to suggest that combination therapy lowers TSH levels that you know of please.
The latest NICE guidance does seem to rather support the insanity of the TSH being in range argument. It only came out in August last year and unfortunately some endos’ seem to be swallowing it whole.
I was referred into another service last year although huge waiting list and so if can’t get new GP on board will look at other alternatives.
I agree this situation is absolutely insane, don’t know whatever happened to the ‘do no harm’ oath.
Thanks for getting back to me with a well needed dose of sanity Grey Goose.
Is there any evidence to suggest that combination therapy lowers TSH levels that you know of please.
It's not combination therapy per se, it's the T3 that suppresses the TSH. And anyone who actually takes T3 will know that. It's just doctors that don't - or won't admit it. I don't know of any scientific papers that explain this. But, for goodness sakes, if you know what TSH is and what it does, it should be obvious that it's going to be suppressed when taking T3. It's just common sense. So, I don't understand why they can't work that out for themselves! It's insane!
The NICE guidelines are just that: guidelines. Not strict rules that they have to adhere to. They are supposed to use their own initiative and their brains - if they have one.
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease,
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Hello, yes I did split the dose although in half rather than quarters. Last dose more than 12 hours before test. Last year I reduced from 20 to 10 and divided that by 2 although even the reduction didn’t raise TSH, hence endo moving onto the reduction of levothyroxine this year.
I did stop B12 7 days before the test as it does contain biotin and I didn’t add anything in its place so maybe explains the low result.
I agree neither T3 not T4 are sufficiently through range. T3 was nearer top of range in June. Prior to adding T3 I always felt better when T4 was near top of range.
If I didn’t have the low TSH hanging over me, based on current hypo symptoms I would definitely be looking to increase meds.
Hoping to get new GP on side later today (I am an eternal optimist) I will be writing a very strong letter to head of department and making a formal complaint.
These data demonstrate the extreme sensitivity of TRH-induced TSH release to inhibition by the chronic administration of quantities of T3 + T4 which do not raise serum T3 and T4 levels above the normal ranges.
Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents.
All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400).
Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked. Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were less likely to have cardiovascular disease or be treated with a statin.
During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism.
For patients taking liothyronine there was no increased risk of death (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or cardiovascular disease (HR 0.90; 0.42–1.92).
There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).
No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated. There was an increased risk of mental health disorders if liothyronine was used alone.
No single dose of T4 was able to restore normal plasma thyrotropin, T4 and T3, as well as T4 and T3 in all tissues, or at least to restore T3 simultaneously in plasma and all tissues. Moreover, in most tissues, the dose of T4 needed to ensure normal T3 levels resulted in supraphysiological T4 concentrations.
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first
retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Stop iron supplements 5-7 days before retesting
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
We see repeatedly that patients left under medicated for thyroid, directly resulting in low vitamin levels due to low stomach acid and poor nutrient absorption
Increasing numbers of thyroid patients prescribed T3
Hello, Levo brand is, Wokhardt-have been on this brand for couple of years as couldn’t get on with accord . I travel 45 mins to a chemist who can guarantee this brand and have confidence in it .
Lio brand has recently changed funnily enough to accord although in all honesty the TSH was more suppressed on previous brands. I haven’t noticed any adverse reaction to any lip brand although may be biased as still so grateful that I am on it .
Sorry, yes. Brand of lio is mercury pharma. I have been on this brand for the majority of the time and seemed okay. I don’t usually get on with Teva. Now I have checked my statin and lansaprazole are both Teva so need to sort that out too.
Will do, I never used to drink milk and could go back. Have been having milk and more eggs since going gluten free gluten but could cut it out altogether tbh. Certainly worth a try and if seems a very small price to pay.
To be totally honest before this person decided to reduce my meds I really was ticking along nicely. Walking on a steep decline on the treadmill 1 hr per day 5 days per week and resistance training with PI twice per week and although overweight I was quite fit and felt healthy.
would you believe just got a text from GP surgery saying they don’t accept private tests and I need to get some more. You couldn’t write it could you. The private GP said they use an NHS approved lab and have never been challenged to date.
Will do thanks., I did have to show photo ID to get bloods done privately and did go to a private GP for that reason.
They are just making themselves look ridiculous as they will now send me to a surgery 2 miles away for an out of hours appointment to a team who don’t know me from Adam and wont ask for ID.
The NHS is certainly broken.., good news being thanks to this group and your continued support I am certainly not yet broken!
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