Diagnosed hypothyroid 2011
Taking 25mcg levothyroxine
Symptoms are hard stool, bloating, dry skin, flaky skin and nails, cold hands and feet, weight loss, bags under eyes, tiredness
Thank you
TSH 6.7 (0.2 - 4.2)
FREE T4 12.9 (12 - 22)
FREE T3 3.1 (3.1 - 6.8)
TPO ANTIBODY 579 (<34)
Am I likely to go over medicated if I increase to 50mcg please
MissyJ85,
Can you post your recent thyroid results and ranges?
Have you been on 25mcg since 2011?
TSH 6.7 (0.2 - 4.2)
FREE T4 12.9 (12 - 22)
FREE T3 3.1 (3.1 - 6.8)
TPO ANTIBODY 579 (<34)
Been on 25mcg levo since 2011 yes
Thank you
MissyJ85,
You are undermedicated to have TSH 6.7 and FT4 and FT3 low in range. Ask your GP to increase dose.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP. The Thyroid UK office opens on 3rd January.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Hello MissyJ.
I was diagnosed in 2011 too.
May I ask if there is a reason you are on such a low dose as 25mcg? That isn't even the start dose? Do you have other medical conditions / are you on medication?
Do you know your most recent blood test result? You should be having Thyroid Function Tests at least Annually.
Have you had any tests to check your Adrenal function?
Have you ever had blood tests to check nutrients levels of
Vitamin D
B12
Folate
Ferritin
Calcium?
If not then I would ask GP for tests.
If you can get copies of any blood tests results, please put on here for comment and include full information ie: dates of tests; result; normal range in brackets; any comment by lab or doctor.
Usually (unless there is a reason) you would be started on 50mcg Levothyroxine when diagnosed.
Then retested every 6 weeks and given an increase of dose @ 25mcg each time (according to new result and symptoms) until you are stable.
Some people stay on 75mcg some 100mcg some go on to much more.
You are having symptoms. So I would ask for blood tests and seek correct dose for me:
Thyroid tests to ask for:
TSH
FreeT3
FreeT4
T3
T4
Also
Thyroid Antibodies TPO and Tg.
You may not get all but I would ask anyway!
Go in to GP prepared with a list of symptoms and a list of tests you want.
What actually was your diagnosis? Did you have Antibodies tested? If so they may not do them again.
All the best with that. xx🐥
I don't want to feel overmedicated or have overmedicated results
I have acid reflux
Iron deficiency
Folate deficiency
Vit D deficiency
B12 deficiency
Taking lansoprazole, folic acid, ferrous fumarate, vit D and previously B12
I have low adrenal function
Also high plasma viscosity and high globulin and protein levels
TSH 6.7 (0.2 - 4.2)
FREE T4 12.9 (12 - 22)
FREE T3 3.1 (3.1 - 6.8)
TPO ANTIBODY 579 (<34)
The aim of taking levothyroxine is for the TSH to be 1 or below, not higher than the range, and your range is 4.2 so the GP has no excuse at all for keeping you on a low dose.
We can develop serious illnesses if we don't have sufficient T3 to run our heart, brain (both need the most T3) as well as the millions of T3 receptor cells in our body. Both FT4 and FT3 have to be towards the upper part of the range and both yours are bottom.
Diagnosis hypothyroidism in 2011 with TSH 28.8 (0.2 - 4.2) FT4 10.1 (12 - 22)
CALCIUM 2.26 (2.20 - 2.60)
CALCIUM ADJUSTED 2.25 (2.20 - 2.60)
FERRITIN 18 (15 - 150)
VITAMIN B12 197 (180 - 900)
FOLATE 2.2 (2.5 - 19.5)
VITAMIN D TOTAL 33.9 (25 - 200)
All of the above are dire and I shall add in SeasideSusie who is excellent at vitamins/minerals.
Your doctor has neglected you.
Reply no 4
J
There should be more information following your Vitamin D result. Did you get this over phone? Ask for a print out and give all comments please. As you may need more Vitamin D.
Thank you
I got the result over the phone
I am in deficient range
I will ask for more vit D if I need to be on more
Yes J.
If you have been told you are deficient then you should have been prescribed Loading Doses of 280,000 IU to 300,000 IU to be taken in split doses over several weeks - then left on a maintenance daily dose of at least 800 IU but up 1000 or even 2000 depending on the individual. So please discuss this with your doctor also.
You're going to have a long list! But keep going back to GP till everything is sorted. Make a double appointment initially. You deseve proper care and treatment.
At least they have done all the right tests- some people struggle to get the doc to do them.
xx
You are undermedicated at present. I presume you are aware that you have autoimmune hypothyroidism also known as hashimoto’s disease. There is a lot of information on here so please research further. In hashimoto’s the body produces antibodies which attack and slowly destroy the thyroid over time. Many people find adopting a gluten free diet reduces antibodies and reduces flare ups. With iron and folate anaemia as well as vit d and vit b12 deficiency your body will not be able to utilise the levothyroxine properly. Are you on b12 injections? It might be sensible to pop over to the pernicious anaemia forum to ask questions about that.
You also need to take your levothyroxine on an empty stomach and drink only water for an hour before food and at least 4 hours away from iron tablets. Proton pump inhibitors such as lansoprazole can also stop absorption of levothyroxine so your pharmacist should be advising taking these 12 hours away from levothyroxine.
Most patients get a reduction in symptoms with TSH low in range, around 1 or even less. It is worth noting that undertreatment is as dangerous as overtreatment with raised cholesterol increased risk of liver disease, kidney disease and heart problems, whilst suppressed TSH but in range ft3 and ft4 less problems.
Sadly many medics are poorly educated about thyroid problems therefore you will need to research and take responsibility for your own health. Good luck on your journey.
This is Hashimotos?
TSH 6.7 (0.2 - 4.2)
FREE T4 12.9 (12 - 22)
FREE T3 3.1 (3.1 - 6.8)
TPO ANTIBODY 579 (<34)
I am not on B12 injections anymore, I take levo on an empty stomach and drink only water for an hour before food and drink and I do not take iron tablets. Also taking lansoprazole 12 hours away from levo
Thank you
3rd reply -
Yes it sure is! Did no one tell you. Don't think they told me either. Maybe because I'd already told them??? 😄 Lovely woman on Thyroid helpline told me over the phone that I have Hashimoto's! Long story!
I found out about most info on my conditions from copies of my hospital records. I applied within 40 days of last being seen so got them free of charge. Some doctors, however, have communicated well - such as the ones who did Barium Swallows and recent ENT Consultant.
All the best with getting sorted.
Ask GP for some Lactulose medicine as a natural stool softener and drink extra water until you are properly medicated and symptoms ease.
Thank you
No GP or endo has ever told me I have Hashimotos
Reply 5
Hi again J.
When are you next seeing Endo? If not soon I would be considering phoning Endo's secretary in the morning and asking to be seen in clinic. OR at least for a phone call back.
But if your GP is wanting to see you to discuss these results - then see any of them you can tomorrow also.
I am going to call endo tomorrow to see if I can get an urgent appointment
GP wants to discuss results with me next week
Thank you
So how are you addressing your vitamin and mineral deficiencies? What are your symptoms?
Symptoms are hard stool, bloating, dry skin, flaky skin and nails, cold hands and feet, weight loss, bags under eyes, tiredness
One and only B12 injection done in June 2017
Folic acid 5mg once a day
Vitamin D 800iu once a day
Ferrous fumarate once a day
Symptoms were given in post ?
Ferrous fumarate is an iron tablet! Definitely time to change endocrinologist, are you seeing them on nhs? If so consider complaining through PALS.
Change your doctor immediately as you have been seriously underdosed for years.
We have to read, learn and ask questions if we've to avoid consequences of underdosing.
50mcg is a starting dose with a blood test every six weeks with an increase of 25mcg levo until we feel well, the TSH is 1 or lower with a Free T4 and Free T3 in the upper range. The latter two are rarely tested for some unknown reason to me but I have found, particularly on this forum, that doctors are mainly to be avoided as they know no clinical symptoms. They only look at a TSH result and many believe if it is somewhere in the range their job is done.
Before the blood tests and levothyroxine were introduced we were diagnosed on clinical symptoms and given NDT (natural dessicated thyroid hormones) this contains all of the hormones a healthy gland would produce. T4 is levothyroxine and should convert to the only Active Thyroid Hormone, T3, which is required in our billions of T3 receptor cells.
You have an Autoimmune Thyroid Disease also called Hashimoto's - the commonest form of hypothyroidism but treatment is the same. It is because you have thyroid antibodies that are attacking your gland - they wax and wane. You can reduce the antibodies by eating gluten-free food.
You need an increase to bring TSH to 1 or lower with FT4 and FT3 in the upper part of the range.
Blood tests have to be at the very earliest (TSH is highest then), and fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as that's all the take notice of.
You should also ask for B12, Vit D, iron, ferritin and folate.
Get a print-out each blood test for your own records and make sure the ranges are stated as ranges are imperative in order for members to comment upon results.
I have acid reflux also. I take Zoton Fastab lansoprazole.
I'm not sure why you fear being overmedicated.
As you can see you are undermedicated.
How old are these test results? Did your Doctor tell you to take 50mcg?
What do you mean by low adrenal Function - what does your doctor say about this ? Have you any test results ?
As you can see your TSH is far too high. What is your Target therapeutic level of TSH? Mine (according to Endocrinologist who diagnosed me) is maximum 2. However I have read on here of the opinion that maximum of one is ideal. So yours needs to come down a lot anyway.
Your Free T4 and Free T3 (as you can see) are both very low - bottom of range.
Your TPO result confirms you have Hashimoto's Autoimmune Thyroiditis.
You need to see your doctor and find out why you are only on 25mcg.
You haven't given your nutrients levels results or any test dates. Nor have you said what supplements strengths you are on. Full information is needed for anyone to be equipped to comment.
Do you take your Levothyroxine on its own with water?
You need to take your Lansoprazole HOURS away from your Levo.
I take mine very early am. Around 3.30 - 4 am. In order to fit everything in to the morning!
I am supposed to take Gaviscon Advance at night so can't take anything else at night. This is because I also have Laryngopharyngeal Reflux ( also known as "Silent reflux "). I have conditions caused by acid damage - Osophageal stricture /hypertrophy and posterior prominence on Cricopharyngeus. The ENT Consultant said I need the Gaviscon to stop vapours / pepsin rising as well as acid. As current thinking is that damage can be caused by pepsin as well as acid.
Back to you!
You also need your TSH brought much lower to protect your Pituitary Gland from overworking by producing lots of it.
So I would see your doctor asap and ask how this will be best achieved whilst taking into consideration your adrenals.
🐥
Results done 1 week ago
GP wants to discuss results with me first
I have low cortisol from baseline result which was 180 (140 - 700) and I am going back to GP to push for more tests
Target level for TSH is 1 -2
Nutrient levels are posted somewhere else and they were taken 1 week ago as well
I take levothyroxine on its own with water
I take lansoprazole 12 hours away from levothyroxine
No longer on any B12
Folic acid 5mg
Ferrous fumarate 210 once a day
Vit D 800iu once a day
Thank you
Is there a reason that your doctor has never increased your levo? 25 mcg is less than a normal starter dose. Your doctor should have retested you after six weeks, and increased your dose by 25 mcg.
You say you don't want to over-medicate, which I understand, but you're a long, long way of over-medication. And, honestly, a brief period of over-medication until you have your following labs, can't possibly be worse than the symptoms of under-medication that you are suffering right now! Staying on too low a dose for too long can have disastrous effects. You really do need an increase in dose right now.
I am worried I will start sweating and getting a tremor and losing sleep and losing weight if I increase
Thank you
Sweating, losing sleep and weight and having a tremor can just as easily be hypo symptoms as 'hyper'. When you are adequately medicated, you won't have any symptoms at all - hopefully - but you are far from adequately medicated at the moment.
Also, if by chance you do increase too far (eventually, not now!) all you have to do will be to reduce your levo slightly. Being over-medicated will not give you permanent tremors or sweating. Has your doctor been telling you scare stories?
The endo has been saying if I increase I will get heart problems and bone problems and symptoms of over medication like that and so I have felt nervous to increase
So was it the Endocrinologist who left you on 25mcg ?
Yes
I would see GP then. However - you may see a different person in Endo's clinic.
Was it actually the Consultant who said and did this or one of his/her team?
I saw a consultant who said this
I am planning to see a different one for a second opinion
Thank you
B12? Calcium? Zinc?magnesium, vitamin d, etc. Be cautious of course, am not an expert.
*supplements
Point of Return has some products that may help. Fish oil for inflammation, and Support Powder 4 glutathione , master anti-oxidant. A non-profit, something to consider?
Not sure what to do about B12, only had 1 injection and haematologist said one injection should be enough
Calcium levels go up and down constantly
Nutritionist told me I have low zinc level because of the zinc taste test but I didn't really accept her advice because she did not test me for anything, just said I need to take 10 other supplements without knowing if I was deficient or not
Will look into these if needed
Thank you
Some other stuff to add to your list!
I would ask for testing for Pernicious Anemia with such low B12 and low (BELOW range) Folate (B9).
The fact that you were given a B12 injections suggests that Haematology started treatment for this ??
Did they do any further testing?
ALSO - Ferritin so low - I don't know much about the treatment for this but think you need full testing (Full iron panel) and proper treatment.
I would also phone Haematology early in the morning and tell them you've had some very worrying results and can you come in to clinic. Or, turn up at reception (armed with your results lists ) and ask if you can be seen sometime very soon as you are not feeling at all well and don't understand why you only had one injection.
Haematology started treatment for the low B12 and they said one injection would be enough
Complete blood count and iron panel show iron anaemia
No further testing by haematology
Thank you
Your GP and endocrinologist have left you seriously under medicated and obviously don't understand Hashimoto's
Your Hashimoto's is badly affecting your gut function causing low vitamin levels and low vitamins stop you using your thyroid hormones
See Box 1. Towards end of article
Some possible causes of persistent symptoms in euthyroid patients on L-T4
You will see low vitamin D, folate, ferritin and B12 listed
onlinelibrary.wiley.com/doi...
You need a new endo.
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
Here is a reply from SeasideSusie to similar dire levels and how to treat
healthunlocked.com/thyroidu...
You also need to seriously consider changing to strictly gluten free diet
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
Low stomach acid is much more likely than high stomach acid
This is very often misdiagnosed. Virtually same symptoms, but totally different treatment
Taking any PPI eg lanzaprole lowers vitamin levels too
However you MUST NOT just stop taking lanzaprole. It must be reduced very carefully and other things taken instead
healthunlocked.com/thyroidu...
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
thyroidpharmacist.com/artic...
drmyhill.co.uk/wiki/hypochl...
scdlifestyle.com/2012/03/3-...
Links about low vitamins as result of PPI
gov.uk/drug-safety-update/p...
pulsetoday.co.uk/clinical/m...
ncbi.nlm.nih.gov/pmc/articl...
Other things to help heal gut lining
Bone broth
thyroidpharmacist.com/artic...
Probiotics
carolinasthyroidinstitute.c...
Importance of magnesium
Results help please
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