Hi all, I just got my most recent blood test results. I'm so happy I convinced my doctor to test T3 because I'm 100% sure they would have blown me off otherwise with these results (the dreaded "normal range"). I was pretty close to intentionally skipping my meds to push it out of range at this point...
I'm seeing a new doctor next week that I've never seen before (the one I know who was good to me last time is on leave and her next appt is in over a month). So I have no idea how receptive they will be.
But I am quite certain I need an increase in levo or maybe even a T3 prescription. And it looks like my ferritin is super low again, so will need to sort that out. I got prescribed ferrous fumarate before, but it really upsets my stomach, so thinking of asking for something else.
I'm 27 years old, Hashimoto's and currently on 75mcg levothyroxine. I've been having more noticeable fatigue etc recently.
Please share any self-advocacy advice/resources!
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You definitely could do with some T3 looking at your results. And also some ferritin or something similar. I take T3 and ferris fumerate due to low blood results previously. My symptoms was really bad fatigue and lack of energy and strength. I had a multitude of symptoms really. Once I got the T3 my life changed dramatically in a very good way. I hope you get a trial of combined T4 plus T3 at the very least. If they refuse the T3 probably on cost grounds I’d go private to obtain it through a private endocrinologist. I had to do that. It’s changed my life from being unable to walk to now going the gym 4 times a week and I’m now full of energy and life.
I'm so glad T3 helped you! I hope I can at least get a T4 increase and maybe some iron supplements, and then we can see about T3. I'm going to try to arm myself with as much knowledge as possible.
you are right about having to increase your T3 level. I would just like to draw your attention to your high platelet count. I had this problem but doctors ignored it until I had a thalamic stroke , because my blood vessels are too narrow and my blood was too thick ( my conclusion). So, they put be on anti platelet medication . My thyroid responded badly to it ( I was experiencing thyroid storm symptoms at night) and eventually I had to have the thyroid out, but before then I sourced a natural blood thinner, Gingko Biloba which, unlike synthetic blood thinners, have not produced any side effects for me. You can buy ginkgo biloba anywhere but I am using a pure version, Gingko Royal, brand. Good luck!
Yeah, I've had a consistently high platelet count pretty much every time I've ever been tested. But because it's only slightly high they've never brought it up. My blood pressure is fine / actually tends to run low (I have postural hypotension). I do have extremely small veins, getting blood out is a struggle.
Was this last test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
High TSH over 2, and low Ft4 and Ft3 shows you need 25mcg dose increase in levothyroxine
Free T4 (fT4) 10.4 pmol/L (7.7 - 15.1)
Ft4 only 36.5% through range
When adequately treated your Ft4 (levothyroxine) will be at least 60-70% through range
Ft3 will increase as Levothyroxine dose rises
Approximately how much do you weigh in kilo
Guidelines on eventual daily dose is likely to be approximately 1.6mcg Levo per kilo of your weight per day
Thank you! I'll push for an increase. Do you have a link to the official guidelines that I could show to my doctor?
I'm about 88kg at the moment. Have been losing weight over the past year (tl;dr was pre-diabetic, got put on metformin and changed my diet, it helped me lose weight for the first time in years.)
The test conditions were met except for the before 9AM one (it was just after 10am though, so not too far off).
Many medics incorrectly only look at TSH for adjusting dose Levo. Essential to always test TSH, Ft4 and Ft3
As the dose levothyroxine increases over coming months, you might find it easier to loose weight
With Hashimoto’s it’s ALWAYS worth trying strictly gluten free diet
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you very much! The metformin study is super interesting, I will mention that for sure.
I've been on 75mcg for about 4-5 years. Random generic brands, whatever the pharmacy gives me.
Already dairy free (mostly), not coeliac. Food is a struggle so idk what I would eat on a gluten free diet. I will consider it if things do not improve after getting meds and iron sorted.
I've been on 75mcg for about 4-5 years. Random generic brands, whatever the pharmacy gives me.
Very poor care to have left you on such an inadequate dose so long
as you are dairy free INSIST on lactose free levothyroxine
At 100mcg you have two options Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
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 and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
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 264l
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.
Before considering adding T3 you should be on a higher dose of levo. 75 mcg is very low and your T4 result isn't very good either. Increasing your levo will increase both your T4 and your T3. Once you're on a dose of levo where your T4 is about 75% in the range and you've managed to increase your vitamin levels (you should have an easier time absorbing iron if you're on a higher dose of levo), if your T3 is still abysmal that would be the time to consider adding T3. Do you have results for your vitamin B12, vitamin D and folate by any chance?
In terms of iron supplements, there is one called ferrous gluconate that is meant to be very gentle on your stomach. I would try that in the highest dose you can find, and don't be afraid to take twice the dose per day. Make sure you take it with vitamin C to promote absorption, and at a different time of day to your levo (at least 4 hours apart).
Hi! I don't have results for the other markers you mentioned, no. This is just a test from my GP, who initially only ordered TSH and full blood count. I bullied them into adding T4 and T3. I'll bring those up once I see the doc, but honestly they are so stingy on tests that it feels like a lost cause (and I almost feel bad about asking because it feels like I'm wasting NHS resources).
If they don't agree I might honestly consider a private test. Maybe it's time to stop cheaping out on my health and accept that I have to spend money :/
Your health needs are just as important as anyone else's, and you're not responsible for the demise of the NHS. Demand the care you pay for as a taxpayer, and don't take no for an answer. If your GP doesn't listen, find one who does. It's not necessary to go private as a first resort.
Thank you. I was going to see a specific GP who previously was sympathetic, but she's on leave and very booked up. I'm trying to find a local group of people with thyroid conditions to see if anyone knows good doctors. No luck so far.
If your usual GP is good but frequently isn't available, meaning you have to settle for an inferior one, then it's worth looking for another GP. You want someone who listens, shows respect and is knowledgeable enough to treat Hashimoto's. This may mean calling around a few GP surgeries (look on Google Maps for surgeries near you and check the reviews). When you call or visit them, ask the receptionist "Hi, I have an underactive thyroid and I'm looking for a GP with experience treating hypothyroidism and who listens and believes what I say. Please can you recommend someone from this surgery?" The response you get will tell you everything you need to know about whether to register at that surgery.
Yeah, that's why I am trying to see if there are people in the area who also experience this. Thyroid issues aren't that uncommon so there must be. That said, I'm with one of the biggest GP practices here and they're currently merging with another, so my doctor options are about to expand. I also have other chronic conditions and the doctors there have been good for them, so I'm happy to stay for now and see a few different doctors from here if necessary.
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