osteoarthritis

[Tricki]

Hi - does anyone else have arthritis and get swelling? My knees are both full of fluid at the moment and my ankles look a bit swollen too, and I wondered if it could be linked to me not being on enough thyroxine? It’s a nightmare getting a doctor‘s appointment, even on the phone at the moment, so I thought I would get some advice on here before I rang them. Thanks.

[SeasideSusie Remembering]

Tricki

I wondered if it could be linked to me not being on enough thyroxine?

Do you have current test results/ranges, that would give a clue.

How much Levo do you take?

[Tricki in reply to SeasideSusie]

Hi Susie - I haven’t been tested for about 6 months, I am on 75mcg levo, been on that dose for a couple of years now, but it’s the lowest dose I’ve taken in 20 years. The doctors just keep saying I’m in the ‘normal’ range. Just wondered whether the excess fluid could be linked to the thyroid.

[SeasideSusie Remembering in reply to Tricki]

Tricki

I am on 75mcg levo, been on that dose for a couple of years now, but it’s the lowest dose I’ve taken in 20 years.

Do you have the test results that prompted this dose reduction?

What dose were you on before reducing to 75mcg.

The doctors just keep saying I’m in the ‘normal’ range.

If you are in England, do you have online access to your results? If not see if your surgery offers it and register for it. You will then be able to see your test results/ranges.

If no online access contact the surgery and ask receptionist (not the doctor) for a print out of your results, say you'll collect in a day or two at their convenience (they will have to ask GP permission to release results).

Then come back and tell us what the latest results were, including the reference ranges.

75mcg Levo is just on step up from a starter dose so it's possible that you may be undermedicated. Whether or not your osteoarthritis and swelling is connected it's not possible to say, plenty of people have this condition without being hypothyroid.

For future reference, we recommend the following protocol for thyroid tests:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[SlowDragon Administrator]

Request GP also test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

Do you know if your hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s. Usually diagnosed by high thyroid antibodies and/or ultrasound scan of thyroid

[SlowDragon Administrator]

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

sps.nhs.uk/wp-content/uploa...

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

LEVO DOSE SHOULD NOT BE DETERMINED BY TSH

Diogenes/Toft paper:

bmcendocrdisord.biomedcentr...

healthunlocked.com/thyroidu...

The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:

Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis

February 2020 Journal of Clinical and Translational Endocrinology 19:100219

DOI: 10.1016/j.jcte.2020.100219

LicenseCC BY-NC-ND 4.0

Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich

LlINK TO PAPER:

ncbi.nlm.nih.gov/pubmed/320...

sciencedirect.com/science/a...